Another day, another doctor (this is a long one)

Last Monday we saw the pediatric surgeon and oncologist. The update on the masses in her kidney is as follows: April 24th Kaia had a CT scan. The hospital, not surprisingly, could not coordinate the ear tube surgery and ABR hearing test so she just had the CT scan. They still had to sedate her, but it was “conscious sedation” versus full-on anesthesia which was supposed to be much a lighter level of sedation. We were both with her the entire time. It was really hard watching her little body go into the CT machine. She was “drunk” the whole day Friday from the sedation wearing off.

I had a doctor’s appointment for myself scheduled for later that morning and I was planning to cancel it. However, I thought, what better day to keep her strapped in the stroller than today? Normally I don’t like to keep her restrained when she could be practicing moving her body. But that day she was so impaired. She literally was like a drunk getting behind the wheel that just doesn’t realize how impaired they are. She would try to stand up from the floor and walk and would start keeling over and couldn’t understand why her body wasn’t working the way she wanted. It was dangerous for her and stressful for me. So, I strapped her in the stroller, and I went to my appointment and got that out of the way.

That night we also had a parents night out scheduled, which we were going to cancel because Kaia was still so unsteady on her feet. We realized that most of the time they hold her anyway. She’d be safe and there was no real reason not to go. And we really needed a night for us after the day we’d had. We dropped Kaia off and went back out to the car, which now suddenly wouldn’t start. No warning signs before of hesitant starting. Nothing at all previously to indicate that anything might be wrong. Completely out of the blue it just wouldn’t start.

By some lucky twist, we had jumper cables in the trunk and another nice parent gave us a jump. Thankfully Sam's Club was close by and open, so we spent our date night in the parking lot at Sams Club, Paul’s changing of the battery aided by the helpful cashier’s offer of a wrench loan. If it had to happen, it was actually a good thing that it happened when it wasn’t Kaia and I alone in the car, and that it happened on a night when we had time to deal with it and weren’t in a rush to get somewhere. Even after changing the battery, we still had time for a quick dinner before picking up Kaia, who, as it turned out, had a fine evening as well.

We didn’t hear back from Dr Kidney until right before leaving for the parents night out (after much pestering of his office). He informed us that they saw multiple masses in her good kidney with the CT. They didn’t look like anything he had seen before. His initial reaction was that he recommended a biopsy but since he was on his way to a kidney conference he was going to ask a few other docs there what they thought. He also asked the most ridiculous question – “Does she have any other medical issues?” I was like, “well, you know she has this syndrome…22q13 syndrome…yes it affects the kidneys…”, etc. Unbelievable. You’d think he’d look at her chart before he called us, right? Anyway, he asked if this was common with her syndrome. I immediately jumped on the parents’ message board for her syndrome and searched for any kidney issues besides multicystic kidneys. Hydronephrosis, reflux, and multicystic kidney are all reported. But nothing else. So I posted a question specific to the masses and also emailed the researcher after whom Kaia’s syndrome is named and asked if she knew if any kidney masses had been reported with the syndrome. I copied Dr Kidney in on the email as well as her developmental pediatrician. Dr Kidney told us he’d get back to us early the next week. Dr Development had nothing to add.

Monday came and went. Tuesday came and went. Wednesday came and went. Normally I’d be on the phone hounding a doc who didn’t get back to us. But I really wanted to give him time to check all the resources on his end. And, it was all too easy to ignore this. I don’t really want to think about it being anything serious. I knew the options were to wait and watch the masses or biopsy. Scary thoughts if a biopsy came back malignant because she only has the one good kidney.

Kaia had an appointment Thursday morning with her developmental pediatrician. We asked him if he could be a resource for us in coordinating situations like the one last week with the ear tubes and CT. He agreed that was his role. Kaia’s got so many issues that someone needs to be quarterbacking her care. Someone on the inside of the system. Because no matter how loud I scream, none of these people hear. He left the room and immediately started making phone calls. He was already aware of the kidney situation because I had copied him in on the email I had sent Dr. Researcher regarding if any other kids with the syndrome had experienced these types of kidney masses. He just thought that Dr Kidney was following up on it. He coordinated an appointment for us with the oncologist and surgeon. I realized after speaking with him that we may have questions for Dr Kidney too when we met with these other doctors. However, the magic contact was gone. I was now stuck again with the nurses and once again, was given the run around: “No, their office (the other doc’s) needs to be the one coordinating this”, they emphatically stated. Messages were left, no phone calls returned and a repeat of the week with the ear tubes commenced. I’m so done. I know if we want anything done we need to speak directly with the doc and have him do the legwork. I am so sick of this hospital. I can’t believe that all hospitals treat patients and parents this way. There is only one other option in Indianapolis - another children’s hospital that may or may not be better. Indiana just seems to have such an inbred/nepotistic population of medical professionals. Most are trained instate (who would actually want to move here to practice medicine, after all?), they all know each other, and seem to have the same attitude and training regarding patient care. I don’t hold much hope that the other hospital would be much better.

The bottom line is that Kaia saw the surgeon and oncologist Monday. I had been planning on going to a new support group meeting that meets once a month on the first Monday morning of the month. I had one-on-one childcare set up at the meeting for Kaia and I was really excited to go. I felt a little resentful that the appointment meant we couldn’t attend the meeting. However, we both really wanted to hear the doctors’ opinions and recommendations. I was very nervous about what they might say but I was trying to go into it open to receive all the info and get our questions answered. All this just seemed so unfair. I couldn’t even think farther ahead than the next day.

We saw the surgeon first and he was pretty wishy-washy about whether a needle biopsy would be possible. He recommended a laparoscopic biopsy. That is pretty major surgery. She’d need two weeks to recover – couldn’t do any therapies. Then we saw the oncologist who also was wishy-washy but consulted with the surgeon and together they solidified their recommendation for the laparoscopic biopsy. They felt it would give them the best possibility of obtaining an adequate tissue sample and they didn’t want to assume that all the tumors were the same. Since there are two large tumors and several smaller ones, they wanted to at least surgically biopsy the two larger masses and maybe even some of the smaller ones. We were concerned about Kaia’s recovery and possible impact on her kidney function. I also felt that it was excessive to biopsy so much and didn’t agree that we couldn’t assume they were all the same. We were pretty overwhelmed with everything that day, though.

They also drew Kaia’s blood and wanted to get a urine sample. So they placed a couple pieces of gauze in her diaper and we had to walk around and wait for her to urinate so they could get a sample. It was afternoon by that point and we waited until 1:45pm. Kaia hadn’t urinated by that point, I was completely sick of the hospital, and I really wanted to get her home for her nap so that she would take a decent nap and I’d get a little break. I asked if we could just put the wet gauze in a Ziploc and Paul would bring it in the next day. They really didn’t want to let us leave but finally relented and gave me the syringes and a vial to extract the urine from the gauze. Of course Kaia fell asleep on the way home but got a decent nap anyway.

Also, while waiting for the phlebotomist to draw her blood they had sent us to the general waiting area but then came back to get us and asked us to wait in their waiting area. We were a little confused but did so. After they had shut the door, they explained that the other kids in the general waiting area were being tested for a virus. They didn’t say what it was but I was even more paranoid about how in the world we were supposed to keep Kaia healthy in these germ-laden environments. We wash and we wash her and our hands. We use hand sanitizer at every turn.

That night the questions about why they couldn’t do the less invasive needle biopsy kept percolating in my brain. The next morning I called Kaia’s pediatrician and he agreed that it was a rational plan to biopsy by needle and that they should be able to do that. In fact, he felt like considering everything, it was the best thing for Kaia. What if these turned out to be benign? To put her through that invasive of a procedure to find that out when we could’ve done it an easier, less invasive way? Meanwhile, the surgeon’s office was calling us, pushing us to schedule the laparoscopic biopsy. I told them we still had additional questions and I called the oncologist to speak with her about it again. The whole day I was off and on the phone with them about it. She finally called late in the day to say that everyone there – the surgeon, herself, the pediatric and interventional radiologists, felt that a laparoscopic biopsy was the best course and beyond that, the interventional radiologist refused to do a needle biopsy. He felt that in order to obtain adequate tissue he would need to stick her multiple times and she’d be at increased risk for bleeding. Again they pushed us to schedule the surgical biopsy. I was beyond feeling pressured and fed up at that point. I couldn’t help feeling like these people just saw my daughter as a great health insurance package and wanted to do as many things to her as possible to make the most money possible. Encouraged by Kaia’s pediatrician earlier that day, I told them we’d be pursuing a 2nd opinion.

So Kaia’s pediatrician directed us to a surgeon at the other children’s hospital in town. No magical patient relations there either. I couldn’t make the appointment, I was very condescendingly told. The referring doc had to do it. I called the pediatrician’s office (again), who called the surgeon’s office to make the appointment and we were scheduled to see the surgeon the following Tuesday, a week away. Since this was such an urgent matter for the docs at the other hospital, I called (now that Kaia had an appointment made by the pediatrician’s office, they would actually talk to me) and begged for an earlier appointment. I called at least 4 more times. Finally they called me back Wednesday at 1:30pm and said that the original surgeon couldn’t see her but another one was available and how soon could we be there? Kaia needed to be changed and nursed (and would probably fall asleep for her nap as was usual). I still needed to get presentable to leave the house, and Paul still had to pick up the CD of the scans from the other hospital and meet us at the new one. Talk about rushed. We got there at 3pm.

This doc seemed very optimistic that not only could they do the needle biopsy, he agreed that in light of everything, it was the best course for Kaia. Wow – a surgeon that actually wouldn’t do surgery because it was the best thing for the patient not to do it? Astounding. Fortified with hope, we left him so that he could consult with that hospital’s oncologist and to do some more research before coming to a final recommendation for us. This doc also seemed more up to date on the current research/protocols for treatment, or maybe he just actually considered other options and did a better job communicating these to us.

The next day he called and said that they were pretty confident that this was Wilms Tumours. They did indeed recommend a needle biopsy as opposed to laparoscopic biopsy, and in direct contrast with the other hospital, they were not only confident that they could get adequate tissue for a diagnosis, but that they would only have to biopsy one tumor. Due to the tumor location, they were also confident that they could so by insertion through Kaia’s back, thereby avoiding the peritoneal cavity. Biopsying through the peritoneal cavity would change the staging if it indeed is cancer and would mean not only chemotherapy but also radiation. They had a slot the next day on Friday and we took it. This was all happening so fast but I was so glad that I stuck to my guns and had pursued a 2nd opinion. I was still nervous about the general anesthesia but we knew that we wanted to find out what the masses were.

We received the preop registration call from the hospital. We got at least 3 different preop instructions regarding npo/clear fluid timeline restrictions. The biopsy was scheduled for 11am. The first instruction was that I could breastfeed Kaia until 8am. The 2nd was until 5am. The last was nothing by mouth after midnight. The first 2 instructions were from dr’s. The last was from the assistant that did scheduling. She said that babies under 12 months could have breastmilk up to 6 hours before but since Kaia was 22 months she couldn’t have anything after midnight. She kept asking how old Kaia was and repeating that it was breastmilk. I’m sort of starting to feel the toddler breastfeeding discrimination here.

Wouldn’t you know it – Kaia hasn’t had a cold for months now and came down with one Thursday night. I think Paul thought I was making it up because I was so afraid of the general anesthesia, but sure enough when she got up on Friday morning she was sneezing and had a runny nose. Not too surprising after where we had spent the whole week – in hospitals and doctors’ offices. I called the hospital and they told us to bring her in since she didn’t have a fever and that the anesthesiologist would examine her to determine if it was safe to proceed with anesthesia.

The anesthesiologist felt that it was safe to proceed. It was a quick procedure. The radiologist was a little flippant and couldn’t even remember Kaia’s name when he called to tell us he was done and that she was going to recovery. He said they’d be calling us to “let us know when you can go see (long silence) um…your kid.” It would be nice if the doc’s could remember her name but we both agreed we really didn’t care as long as he did a good job in the OR. He said the pathologist’s preliminary report was that it was Wilms Tumour.

By now we knew this is the most common form of renal cancer in children under age 6. It is highly treatable but the standard treatment is removal of the affected kidney followed by chemo. Normally that’s how they do the biopsy too. Since most kids have 2 kidneys, they remove the whole thing, biopsy it, and if it is cancer, there’s no chance of tumor spillage like there is with a needle or laparoscopic biopsy. Since Kaia only has the one functional kidney, that wasn’t an option.

They kept Kaia for 4 hours from the time she woke up for observation since she had a bad experience after the cleft surgery. The good thing was I was able to nurse her immediately when she woke up in the recovery room. They are such Nazis about starting on clear liquids but we had a great nurse in the recovery room who said go ahead to nurse and I was so glad once again that I am still nursing her. She was so comforted by it and nursed off and on the whole time. She was very alert for a while and then fell asleep nursing for a very nice nap.

She was asleep in my arms and my back started to hurt from sitting in that position. It felt sort of like we were on a plane, with her as a lap child, and I was stuck because she had nursed to sleep and if I moved I would wake her. I also started to feel as if the little curtained-off private room area we were in was a prison of sorts. We couldn’t leave. I just wanted to go home. I wanted her IV out, those hospital pj’s off her, and the ambient noise of the hospital to stop. I just hate hospitals. It’s as if time stands still there. It goes in some deep black hole and you can never get it back. It’s like time limbo.

But I took the opportunity to read and actually finally finished El alquimista, the book for my Spanish class that ended on Tuesday. A new session restarts this Tuesday and it’s through a local organization so I don’t receive a grade or anything like that, but it was still bothering me that I hadn’t even found time to finish the book. I get frustrated that I can’t devote the time I’d like to outside of class to studying, reading, and writing.

The one very noticeable difference about the new hospital was how they were obviously more used to caring for kids with special needs. I must have heard the words “g-tube” more times on Friday than I have in my whole life. No one assumed that Kaia could do things that are developmentally appropriate for her age. In fact, they assumed the opposite. We had to ask the nurse who was weighing her if it was okay for Kaia to stand on the scale instead of sitting. And no one assumed that she could walk. I wouldn’t say they were surprised that she could, they just didn’t expect it. That aspect of things was so different. It was refreshing.

And Kaia, well, she actually did better after the anesthesia for the biopsy than she did after the sedation for the CT scan. The anesthesiologist said the agents he used were faster acting. She was totally alert and playing like normal Friday evening. I had such a feeling of relief leaving the hospital and being home with her and Paul that evening. The joy of just being home and having her happy was almost more than I could imagine.

Back to the biopsy itself. I feel so vindicated in our decision to have the needle biopsy rather than the laparoscopic procedure. I hope that if it is cancer, this procedure doesn’t put her at increased risk for metastasis, but the only other options were to treat it like cancer without biopsying it at all, not do anything and just watch it, or proceed with the laparocopic biopsy which would’ve advanced the staging further.

The pathologist will complete the final report by Tuesday. I truly hope they do a thorough job with the tissue that they do have and perform all the tests and stainings in order to rule out anything else. I hope their suspicion that this is Wilms doesn’t hamper a thorough examination of the tissue.

If the final report agrees with the preliminary report, we plan to meet with an oncologist from the new hospital next week and go from there. If it all sounds like a lot, it is. It is overwhelming, yet we are dealing.

I just was not ready for this. Sometimes it seems like nothing is easy with Kaia. Even her drinks are difficult. They are a mixture of whole milk yogurt for thickness, carnation instant breakfast, and either breastmilk, whole milk, or half and half if we’re feeling like she really needs the calories. There’s the fact that she’s not chewing yet. Feeding is a struggle – it’s getting better in some ways but still a struggle. There’s the ever-present fear in the back of my mind that if she doesn’t gain weight the doctors are lurking around the corner watching and waiting to put a feeding tube in her. There’s the constant awareness and reminders required to keep her from w-sitting all the time. There’s the fact that she is still unsteady enough on her feet that she can’t wear shorts or dresses without leggings or her knees will be a bloody pulp from falling.

But we knew all those things were possibilities. Even more than possibilities, they were likely. But cancer??? That’s something I wasn’t expecting.

Not to mention I’ve got my own issues with cancer and traditional treatment. I watched my grandmother, my mom’s twin sister, and my mom, all go the route of traditional western cancer treatment and die a slow death. I have and am watching my sister bravely undergo surgery, chemo and radiation. All the while the cancer progresses. I don’t know if I can put my daughter through that. Part of me believes it might be better to just vibrantly embrace and enjoy the life you have and die when the time is up. But if this is something truly treatable, I can’t deny my daughter that treatment. I think we are just both scared that because she only has the one kidney, we’ll put her through all this: another surgery to place a central line, chemo, possibly radiation, and more sedations for scans. Then the docs may tell us that either the chemo isn’t working and they need to do something stronger, or they may want to surgically remove the tumors. I’m scared to death that if they try to that, they will damage her one good kidney irreparably and she’ll be left without a kidney and need dialysis. And all the prior surgeries and chemo, all that pain, will have been for naught. But all we can do is deal with the info we have at the moment and try to make the wisest choice in consideration of everything.

I know it sounds like we have been consumed by doctors, hospitals, and been bogged down by thoughts of what the future might hold. In a lot of ways that is true.

But, in the midst of all this, there have been moments of great joy over the past couple weeks. There was Kaia starting to sign “My turn” – a huge accomplishment for her, her squeal of surprised delight at the first sight of her new tricycle, and her already almost getting that she needs to pedal the wheels to make it go. There was watching her start to interact and initiate contact with the other kids at horse therapy while the therapists write their notes, and seeing her intense curiosity and slow warming to dogs that the neighbors walk down the block. There is her huge smile when she sneezes and she looks to you to say “Bless you”. There is her progress walking quite skillfully now on uneven terrain like the grass instead of just the sidewalk/driveway. None of these doctors or diagnoses can take those joys away.

And, like Paul said, what he took away from the biopsy on Friday was how well Kaia did. How well she bounced back. How it was harder on him that it seemed to be on her. She really is such a strong girl.

I know that if you are still reading this I can count on you for this request: Pray, if that is what you do, for her. Pray for us. Send us positive energy and warm thoughts like rays of sunshine to warm our souls. Because if this is what they think it is, we are going to need it.

On the go, go, go

This past weekend was go, go, go. Saturday was a balmy 70 degree day here in Indy. We decided to head to the zoo. We purchased an annual zoo membership in December after being entranced by the Christmas light displays and zoo hours open until 8pm. Then January and February set in. Frigid, raw cold. No zoo for us.

I think every family with small children all had the same idea Saturday. It was stroller central. It’s funny. I’ve noticed our stroller usage is different than how other parents utilize a stroller. While other parents will use the stroller as transportation for the child, we use it to haul our huge diaper bag, my purse, etc, and have Kaia push the stroller. Unless, like on Saturday, we have Kaia nap in it – which normally I never, ever do because I am a total nap slave. She needs to sleep in her crib. I revise that – I need her to sleep in her crib. I need that break each day. It’s just funny to see all these other kiddos hanging out, chillin’ in their ride, while Kaia, with proud intent, determinedly pushes her stroller along. I want her to have every opportunity to move her body, to know how to use her body for her own transportation.

I had to nurse Kaia a couple times at the zoo and it was pretty inconvenient. There’s no real great place at the zoo to nurse a toddler. We found an empty amphitheatre but later another Spanish-speaking family and children were hanging there too. There was no other place to go so I nursed her there while all the kids played around us. I wondered for the first time if other people think Kaia might be getting a little old to be breastfeeding. I sat her up to pat her back and burp her and stood her up and realized how big she was getting. It was in stark contrast to a woman I had just witnessed in the women’s restroom nursing (or attempting to) an 11 day old baby. The baby looked like a little bird to me. She had to literally show the baby the nipple and after several attempts finally got the baby to latch on. Kaia was like that before too but now is like a little barracuda. She now lifts up my shirt if I make the milk sign to her. There was no way I could’ve nursed Kaia in that restroom. Every flush of the toilets and rocket launch noise of the hand dryers running intermittently would’ve prevented her from nursing.

Instead, I peacefully nursed Kaia in the amphitheatre, while I watched the large-by-North-American-standards Hispanic family kids play contentedly around us. My husband snoozed on a bench nearby. I felt the wind blowing gently through my hair and the sun shining on my face. My little girl suckled at my breast, and I sensed how truly good life was in that moment.

Kaia also continued hippotherapy last week. She was standing! while riding on the horse this week. She’s been riding a different horse than Molly (the white show pony on the first day). Her newest steed is a brown horse with white markings on the face. He has a thinner back. And, get this, his name is Fairy Tale. Can you believe that? Fairy Tale. How cute is that? After hipportherapy we went up to a friend’s house for a playdate. Kaia will be starting a new OT at the end of April and the only time she has to fit Kaia in is immediately following hippotherapy so we'll have to race back home to see her. Until then we're going to enjoy being out and about early in the day on those days. But the good thing is then we'll have Fridays completely therapy-free. I'm looking into another storytime we could go to on those open days or maybe we'll just do other fun stuff. It's so hard to get out with all her therapies. I'm also looking into starting her in a kindermusik class. The girl isn’t a bit overscheduled, is she?

Sunday we went to the circus in the late morning. I was so excited to go to the circus. We were all a bit disappointed, though. I remembered the childhood magic of the circus, but the reality of the thinly veiled animal mistreatment, borderline talent, annoyingly overamplified sounds, and the mixture of the smell of cotton candy and animal dung just wasn’t as magical as I’d remembered. $18 a seat wasn’t too magical either. We managed to stay for almost the entire show then Kaia had had it and got pretty cranky.

We also spent some quality time out in our front yard/driveway this weekend so that Kaia could practice walking/pushing her various toys. Our whole neighborhood comes alive in the spring. We don’t have a playground in our neighborhood so the kids really just play in the street. It sounds like the projects. It isn’t, but I do think these kids could use a decent place to play. All the kids come running when Paul is out with Kaia. He’s like the pied piper. He’s always been like that, even before we had Kaia. Back then it was all the neighborhood preteen boys (who are now, I can’t believe it, in college). Paul is the cool old guy. The guy that knows how to do all the skateboard tricks that their Dads can’t do. Paul had a half-pipe in his backyard growing up so he is more than a decent skateboarder. But all the kids are in awe of someone who is their Dad’s age throwing those kids of tricks, and ask “Are you sponsored?” I know he loves it.

One very cute little neighbor girl always come to see Kaia when we are out. She is such a sweet girl. She is 5 and will be starting kindergarten next fall. She just loves to come see Kaia. On Saturday we had Kaia’s wagon out, her fancy radio flyer wagon. She alternately likes to push and ride in it. The neighbor girl joyously insisted on pulling Kaia around in the wagon.

I had this image watching them as she pulled Kaia in the wagon down the sidewalk. I imagined them older, in high school. The girl is just over 3 years older than Kaia. I thought - maybe when they are older, in school - she will look out for Kaia. Maybe if she sees her in the hall or at lunch she will say hi to Kaia. Maybe she will set an example for how the other kids should treat people that are different. Maybe she will be a guardian angel of sorts for Kaia. I know that’s a lot to put on a 5 year old girl. But I’ve got my dreams.

What I love about this girl is that she never once has asked what happened to Kaia’s lip/nose. She has a bit of a speech issue – she stutters – so maybe she understands what it’s like to be different and sees past that. Or maybe her parents already have had the talk with her and explained things and told her not to ask. I don’t care. I just love it that she loves my girl.

It was so cute how she would copy how I interacted with Kaia. We’ve been teaching Kaia how to climb into her wagon herself (it’s pretty difficult b/c it has the high wooden sides attached to the metal wagon base) and the other girl took it upon herself to teach Kaia as well. She would repeat almost verbatim the things I and Paul said to Kaia. What power we adults have, for better or worse, on children. I forget that sometimes. It surprised me to see that we have that over other children, not just our own.

All in all, it was a pretty good weekend.

And the milk goes on...

WARNING: What follows is, as my husband describes, a “graphic” description of Kaia’s and my breastfeeding journey. I did not shirk from including details that some may find very comprehensive and personal. I want other moms who are expecting special needs children to find an honest account of the challenges and joys of breastfeeding of a child with special needs. I searched for stories like this before Kaia was born and found few.

So, without further ado, our breastfeeding story:

I was never the girl who knew she wanted to have kids. I was never the woman who knew she wanted to be a stay at home mom. I actually, shamefully now, kind of looked down on women who did. But, there was one thing I always did know. I knew that if I ever did have kids that I would breastfeed. I had this image in my head of me nursing a baby in a rocking chair.

So, when we were told by the doctor that the ultrasound tech had detected that our unborn child had a cleft lip and palate, one of my first questions was, “will she be able to breastfeed?” The doctor said probably not. Then when we got the amniocentesis results back and found out that she had a rare chromosomal syndrome with a primary feature of low muscle tone, it seemed that there was no longer any question of her ability to breastfeed. For the doctors, anyway. Many of the kids with her syndrome needed feeding tubes, they told us. Kids that didn’t even have the complicating factor of a cleft lip and palate. They tried to see with ultrasound how far the cleft extended into her palate. We were told to expect a full cleft including the soft palate. One of the doctors had a child with a cleft and she took a special interest in our situation. She said our baby wouldn’t be able to breastfeed. So did the plastic surgeon. So did the geneticist and developmental pediatrician. I could pump breastmilk, they told me. But she won’t be able to breastfeed.

We made a decision to deliver at a facility that had a level 1 neonatal intensive care unit instead of the suburban hospital where our regular ob/gyn delivered babies, in case there were additional health problems we couldn’t foresee with ultrasound. The doctors at the high risk practice would continue our prenatal care and deliver our baby at the other facility.

Kaia was born via c-section one early Friday morning. The doctors, in the first of many predictions, had been wrong about how far her cleft extended. It barely extended into the hard palate, just affecting the alveolar ridge. Later that day Paul rolled me down the hall to the nicu for our first attempt at breastfeeding. Thankfully this facility with a level one nicu had lactation consultants on duty 7 days a week. Kristin was the first lactation consultant. She showed us how to tickle Kaia’s lips with the nipple to get her to open; how I could sit and hold her in a football hold – the most comfortable position after having a c-section. Because of Kaia’s cleft, she showed us how to use a nipple shield, which allowed Kaia to have the nipple extended further into her mouth. Kaia, the little trooper, latched on right away. She proved them all wrong. Those consultants were there with us for every feeding for several days. We had to prove to the doctors that she could get enough milk so before and after every feeding we weighed Kaia to see how much milk she drank. She had jaundice which made her very sleepy so we had to work very hard to keep her awake during feedings. We tickled her feet, combed her hair, anything to keep her awake. Because she was in the nicu, we used curtain screens around her little bassinet area in the nicu for privacy during feedings. There I was in a wheelchair, completely ensconced by supportive pillows, surrounded by Paul, the lactation consultant, and one or more RN’s. Often the doctors would peek his head over the screens to talk with us or the nurses. I didn’t care. My little girl was breastfeeding.

After a few days we introduced a haberman feeder; a special bottle designed for babies with clefts. Paul could feed her and the nurses could do night feedings in the nicu with it. Upon advice from the lactation consultants, I continued to pump following every feeding and every 2-3 hours when I was away from her. That advice was crucial to me developing an abundant milk supply. Kaia came home after a week in the nicu and I continued to pump after every feeding. Until she had the cleft lip surgery at 4 months of age, I continued to pump. After almost every feeding I would offer her the haberman bottle with expressed breastmilk to make sure she was getting enough milk. We could squeeze it to get her drinking again when she tired.

I liked the haberman at first. I wasn’t an experienced breastfeeder. That, combined with the use of the nipple shield and my abundant milk supply pretty much guaranteed that breastfeeding was a messy spectator sport. It just wasn’t something I was comfortable doing in public. So we used the haberman in public and Paul could help with feedings at night on the weekend and in the evenings.

I became an experienced pumper. That hospital pump was my constant companion. I pumped on airplanes, in airport gate areas, in bathrooms. But most of all, I just pumped. Often. I found a great product called a nursing cape. It was great for nursing and also for pumping. With it, I could pump in all the settings I mentioned and still retain my modesty.

I heard so many new moms complain about a low milk supply problem. I had the opposite situation: an overabundant milk supply. Now, if you have to have a milk supply problem, I was glad that mine was an overabundance. However, it was still complicating. I leaked. I leaked through countless nursing pads. I should’ve bought stock in a company that makes nursing pads, I went through so many of them. Even when Kaia would start sleeping longer at night, my breasts would wake me up at night, heavy, leaking and demanding a release. I also had to pump “off the top”, or pump off the foremilk, before breastfeeding Kaia. I had so much milk that the initial letdown was so powerful and there was so much of it that it would overwhelm Kaia. I would usually pump 2 oz off each side before feeding her. Since I routinely pumped 6-8 oz off each side she still had plenty of milk and she would receive more of the higher fat hindmilk.

There was one advantage to an abundant milk supply. The weight that I had gained while pregnant - the recommended 30 pounds - literally melted off during the first months after Kaia was born. I didn’t do a special diet or exercise program. It just came off. I figured out that I was expending 800 calories or more each day producing breastmilk.

When Kaia was a couple weeks old I went to a La Leche meeting. I thought that I was looking for support and encouragement. Really, I think I just wanted everyone to treat my breastfeeding experience the same. Everyone there focused on how Kaia was different: her cleft. I was already getting used to that and would continue to do so. However, I didn’t feel like it was a great help to go. I also had this underlying feeling of inadequacy as a breastfeeding mom because we were using the nipple shield. That artificial device felt, well, it felt so artificial. So unnatural. I didn’t feel like we were truly breastfeeding. I grew to hate the nipple shield. I had to wash it after each feeding and have it handy for the next feeding. I’d be upstairs ready to nurse Kaia, breast out, and realize the nipple shield was downstairs, freshly washed next to the sink. I lost one and we joked that we’ll find it when she’s 3. She 19 months old now and we still haven’t found it.

I didn’t return to La Leche until Kaia was 7 months old. When I did, I met the most inspiring woman there. Her name was Melissa and she too had a child with special needs. Her daughter had low muscle tone like Kaia, but required a g-tube. Melissa had kept pumping for months to supply her daughter with the best nutrition available – her breastmilk. I was so encouraged to see her there. I thought, if she is comfortable and is able to find encouragement here then so can I.

Eventually, after so many feedings with the haberman, Kaia started to get nipple confused. The week right before her surgery at four months of age she went on a nursing strike and refused to breastfeed. I was so worried that she wouldn’t remember how to breastfeed after the surgery. Of course, I continued to pump to maintain my milk supply and to provide expressed milk for her in the haberman bottle.

The plastic surgeon’s office gave us a syringe/tube contraption to use to feed Kaia after the surgery. We tried it a few times in the weeks before her surgery. It didn’t go so well. Babies have a suck/swallow reflex and there was nothing for her to suck on. We just squirted the milk in her mouth with the syringe tube and she didn’t know what to do with it. I anticipated there would be difficulty after the surgery but the nurse and doctor reassured us, saying we’d be surprised how quickly babies catch on to using it when there is no other food source.

Kaia had her surgery on a Monday morning. It was a very difficult day. She emerged looking swollen and was extremely lethargic. We brought her home the next day even though she hadn’t been drinking with the syringe well. She was so lethargic still. More on this to come in a later post; I want to stay on topic here. By Thursday she still was not drinking from the syringe. I was worried about her hydration and her ability to heal if she wasn’t getting nutrition. Her plastic surgeon finally relented and told me to breastfeed her – but to do so without the nipple shield. She couldn’t have anything that hard near her sutures. A breast by itself is soft enough so that it wouldn’t damage those delicate tissues. I was so nervous. She wouldn’t breastfeed the week before surgery with the nipple shield and had never breastfed without it. Would she recognize that this is where the milk comes from and latch on and drink? Gingerly I held her on our living room couch with Paul sitting across from me. He looked on encouragingly while I held her and showed her the nipple. I slowly and carefully brought her to the breast. Miraculously, she latched on and was so thirsty she didn’t stop nursing for 20 minutes. She came away looking extremely tired and content. When I lifted her she belched loudly. I was crying tears of joy. I was so thankful that I had made the commitment in the months prior to persevere; for all the pumping.

I was still concerned that Kaia wasn’t able to suck efficiently enough to get a sufficient quantity milk so I rented a hospital baby weigh scale, like the kind we had used before and after feedings in the nicu. For a month I weighed her before and after every feeding. There are few resources and research on how much breastmilk babies drink. I found one at: http://books.nap.edu/openbook.php?record_id=1577&page=82 It said babies her age drink 19-30 oz breastmilk per day. Surprisingly, breastfed babies do not increase by much the volume of breastmilk that they drink as they age. Rather, the composition of breastmilk changes as the baby ages. Kaia usually drank between 15-25 oz per day and continued to gain weight consistently on her growth curve. The first month after her surgery, Kaia breastfed exclusively. Breastfed au naturelle, no nipple shield! Hallelujah! The word bottle became a dirty word around our house. I was so thankful that Kaia was breastfeeding I was determined that she would not become nipple confused again. I was completely committed to breastfeeding at every feeding.

Since she was only 5 months old and I really wanted to maintain my milk supply, I continued to pump, usually 3-4 times a day after feedings. I wasn’t sure that Kaia had an effective enough suck to maintain my milk supply. I believed she was able to get the quantity of milk she was getting because I had such an abundant supply and powerful letdown response due to all the pumping. Everyone else told me otherwise. Why are you still pumping? La Leche, lactation consultants, her occupational therapist, even my husband all asked. If she is getting that much milk she should be able to maintain your milk supply. She will take what she needs. I started to doubt my instincts. When she was 7 months old I returned my rented hospital grade pump and pumped sporadically after feedings a couple times a day with a used store-bought pump. My milk supply dramatically decreased. My period resumed. I knew that if I wanted to continue breastfeeding Kaia I needed to keep pumping after feedings to adequately stimulate a good enough milk supply for it to be easy for her to get the milk. So I rented a hospital grade pump again and returned to a prior pumping schedule, 3 or 4 times a day after feedings.

With all that pumping, I accumulated quite a supply of breastmilk. We had actually purchased a deep freeze early on because our freezer just wasn’t big enough to contain all of it. I (half) joked with Paul that all that breastmilk was my life insurance policy. If something had ever happened to me, I knew that Kaia would continue to be able to get the best nutrition for quite some time. Eventually I realized that she would never need all that stored milk. I read about Indiana Mother’s Milk Bank and started the process to become a milk donor. It isn’t the easiest process and there is no benefit such as financial remuneration, but I wanted all that milk to be of use. Milk Banks screen donors, pasteurize donated breastmilk, and give it to NICU’s for preemies and to babies whose health is best served by drinking breastmilk. I think they were genuinely shocked (and very thankful) when I showed up with several large coolers full of breastmilk.

At just over six months, Kaia had started solids as well. I kept getting pressure to increase her solids and have her drink from a sippy or open cup. Until Kaia was 11 months old, we offered breastmilk in an open cup. We noticed her having a wet rattly breathing sound after she drank from an open cup. Upon the suggestion of her Occupational therapist, Kaia had a swallow study done. They couldn’t evaluate breastfeeding in a swallow study, but they found she was aspirating all consistencies; thin liquids, thickened liquids, purees, and solids. Again, more of this subject to come in another post in the interest of staying on topic. The speech therapist that did the study told us she should be admitted right away to insert a g-tube. Kaia’s pediatrician disagreed. Two other doctors that we saw over the next week agreed with him. She was gaining weight on her growth curve and had never had pneumonia. Both would be likely to have happened if she truly was aspirating. The pediatric GI doc encouraged me to continue breastfeeding her as long as I was willing. You’re doing something right, he said.

Something right, indeed. No ear infections, no major illnesses, no pneumonia. All common for kids with clefts and especially kids that are aspirating the way Kaia was supposedly aspirating. It makes me wonder how many kids have feeding tubes inserted that don’t really need them. I am not in any way questioning the parents of these children. I just knew that the right decision for our daughter wasn’t a feeding tube. We couldn’t believe that she needed one. We felt if it were true that she was aspirating she would’ve been sick. Not only had she been healthy, she was gaining weight. It didn’t make sense. We weren’t going to put a feeding tube in our daughter and invite all the negatives that go with that (oral aversions, risk of infection) when there was no sound reason to do so.

So I continued to breastfeed her. And I continue to do so. The challenges have changed but persist. Kaia has gone on several mini nursing strikes, usually when her routine is off. Travel days of vacations are usually tough, although many times she has nursed well on planes and fallen asleep doing so. Since about 7 months on, Kaia prefers to breastfeed in a darkened, quiet or noise machine-d environment. I usually feed her in the same rocking chair in her bedroom, whereas at first she would breastfeed anywhere. She went through a period of biting at around 9 months. I used the technique of saying “no bite” in a very firm voice and setting her on the floor for a short time. The biting ceased very quickly. Now she will play and lick at the nipple at the end of a feeding. She has almost all her teeth now; a baby beginning to bite does not equate an inevitable stop to nursing.

Over time, Kaia and I developed a rhythm of breastfeeding. I found holds, or breastfeeding positions, that were the most comfortable for both of us. Instinctually, I developed techniques to assist her feeding that I had never seen other breastfeeding moms do, at least in public. I would lean slightly forward over Kaia, so that gravity could assist with letdowns. I also used the method of compression during feeding to keep the milk flowing, and used hand expression, especially at the end of feedings, to completely drain the breasts without having Kaia needing to work so hard and tire with feeding.

We are slowly weaning. Kaia is nursing on average 3 times a day now. I still get pressure to wean more and quickly. She isn’t eating more solids because of the breastfeeding, people have said. She isn’t drinking more from a cup because of the breastfeeding, people have said. A select few people are vocally supportive of our continued breastfeeding. We finally found a cup that worked for Kaia (her wonderful OT recommended it). Kaia drinks well from it on the rare occasions when I am away from her and she misses a breastfeeding. She doesn’t the rest of the time, because she is getting enough milk from me. I don’t worry about it anymore. I know she can drink from a cup and the time for sole cup drinking will come soon enough.

I feel so fortunate to have been able to fulfill my dream of breastfeeding my little girl. I didn’t have many breastfeeding role models, and even the ones that I did have didn’t understand how breastfeeding a baby with special needs was different. I truly feel like if we could do it, almost any new mom can. I especially want new moms of children with special needs to know that it is not an absolute that their baby will not be able to breastfeed. It does take more commitment. It’s a commitment that has been so worth it for us. I share our experience here to give hope and a realistic view into how breastfeeding a child with special needs is possible.

Come out, come out wherever you are

Sometimes when I go to moms groups in the community or to storytime I feel very alone in having a child that is different. I know that there other children with special needs out there. I just don’t see them. They don’t attend the groups or go to the library storytime. I know it’s hard to get out with a baby, period. Then, when you have a baby that is different, it makes it even more difficult. There may be special equipment to tote like wheelchairs or walkers. Not uncommonly there is the issue of being overscheduled. Lord knows, a therapy schedule can really restrict opportunities for outings. Then there are the comments - the unthinking, insensitive comments that people make out of a place of ignorance. Those comments can make you feel like never leaving the house in order to protect yourself and your child from that surprising sting of hurt.

More than a handful of times I have left groups of typical kids in tears. Not because of the children. It’s most often because the other moms focus on how Kaia is different. I know my daughter is different. But there is so much more to her. She is a typical child to me. She has a whole host of features that are beautiful and stand out on their own merit. I will never forget the people, who upon first seeing/meeting my daughter, didn’t focus on how she was different physically (her cleft) - people whose first question wasn’t “when will she have surgery?”

So, on the rare occasion when I have seen mothers out with their children who are different, who have a physical disability or other quality that sets them out of the typical range of development, my heart sings. I feel a kinship with these mothers. I know how hard it can be. But no matter how hard it is, I feel strongly that it is important that Kaia get out in the world. It is so meaningful for my daughter to see typical kids playing and for her to have the opportunity to interact with them and learn from them. She studies them with a scholar’s concentration at playgroups. I also know how important it is for them (and their mothers) to see her – to realize that there are people whose abilities and appearances are different and that they belong in this world too. So I’ve persevered in making the effort to get out in the world with my daughter. She deserves it and so do I.

And, please, when I joyously share at storytime that my daughter, at 16 months, is learning to stand independently, or at 18 months, that she is learning to walk and it is an extremely exciting time around our house, or at 15 months, that she made her first sign, feel free to celebrate with me. I am not bemoaning her development and achievements, I am rejoicing in them.

And to all the mothers of children with special needs, please come out, come out wherever you are. I need you, my daughter needs you, and all the typical children and their mothers need you. Heck, the world needs you.

Eating Out

B.C., or Before Child, Paul and I enjoyed going out to eat. We enjoyed it so much that we ate out often, more often than we ate at home. A.C., or After Child, we still enjoy eating out but it rarely happens. Early on we tried to go out to eat but I found it just wasn’t that relaxing of an experience. Kaia would get fussy or needy and one of us would have to soothe her or I’d have to nurse her. Meanwhile, expensive restaurant fare sat on the table getting cold. It bothered me to spend the money on restaurant food and then not be able to enjoy it. So, we saved going out to eat for when the in-laws could make it into town to babysit (about once a month), or monthly Parents Night Out, and enjoyed those precious dinners out even more. When Kaia was about 15 months old I decided that it was something I missed too much and that we were going to make a commitment to try to eat out once a week as a family. Occassionally we’ve had those magical dinners out where all the forces of the universe collide to make a perfect family dining experience: Kaia eats well, behaves well, and entertains herself in the restaurant-provided highchair while we eat our overpriced restaurant fare in marital bliss. However, there are times when she gets fussy and needy. We’ve actually walked out after ordering(of course we informed the waiter) b/c she was so worked up I knew there was no way we were going to be able to eat and it was disturbing all the other customers. That time was probably partly our fault b/c she was getting close to naptime.

However, the last few times we’ve been out to eat as a family we’ve encountered a new challenge. Kaia refuses to eat or drink anything. I know that she’s hungry. She will chow down when we get home and put her in her highchair. But at the restaurant, she won’t drink, won’t eat her own foods that we’ve brought, won’t touch any restaurant food. Nothing, nada, zilch. She behaves just fine; she just won’t eat.

I am afraid we’ve created a highchair monster. She has a space saver highchair at home, the kind that straps on to a regular dining room chair and has a tray. I’m glad that she eats in her highchair. I just want her to be a little flexible. In the restaurant highchairs, the table hits her right above chest height. It’s a little high for her to drink from her straw cup and keep her chin tucked for easier swallowing. They also have a lot less support. We usually snug her or our coats around her to keep her supported around the trunk. The other factor when eating out is a distracting/different environment. I don’t know what to do about that. That’s the whole point of eating out – to be in a different environment.

One of her therapists suggested we use her portable travel highchair, which also has a tray, at home for a while. Then, when we go out to eat again, she suggested we bring it to the restaurant for Kaia. Great suggestion but the actual implementation, frankly, is going to suck. That’s a lot to lug into a restaurant. But, if it is the only way, we’ll do it.

Does anyone else have any other suggestions? Did/do your kids do this? Was it just a passing phase?

Caregiver Support Respite

Is your child on the waiting list for a medicaid waiver? If so, and you live in Indiana, then you may be eligible for caregiver support respite. (I say may be eligible because I am not absolutely sure to which waivers this applies. My daughter is on the waiting list for the DD and the support services waivers and these apply. I'm not sure about the autism waiver or others.) Caregiver support respite entails calling your local BDDS (Bureau of Developmental Disabilities) office and requesting a provider pick list. Once you receive the list, you can call and interview providers to make a selection. Many families have their chosen caregiver such as a relative (grandma or aunt, for example) become an employee of said provider, then the caregiver can get paid to take care of the child and it removes the financial burden from the parents. The amount of respite, I've been told by BDDS, is about $2000/yr; which works out to about 10 hours of respite per month. You can have it scheduled each week or use it for a vacation or emergency use. I've heard that with the long waiting list (last I heard in IN it is 5 to 7 years for the DD waiver), the state is "throwing a bone" to the families by providing caregiver support respite.



Our experience: We've had the provider pick list for over a month now. I've made a few calls to providers but I have to admit that I am struggling with this. Only Grandma and Grandpa (and of course her Daddy) have taken care of Kaia when I'm not around. We have left her for a couple hours at a time in the monthly Parents Night Out program a local agency/church offers also, and that has been difficult for me at times. I actually used to work at a provider in my former workplace life (I'm still technically an employee but haven't worked in a year now) and I checked out their website for respite care. I always said when I worked there if I had a child that needed services I would never use them. The situations we find ourselves in. I've worked for several companies though and said the same thing about all of them. I just saw too many employees come and go that didn't care at all about the clients and blatantly disregarded company rules and parental wishes. So I am really hesitant to utilize this with the lack of control over who actually comes into our home. I think the only way to have control over the individual that comes into the home is to do what I mentioned above (have a relative or other trusted person become an employee of your chosen provider). The only other way is for the person to get licensed (not sure if that's the proper term) through the state as a provider and I'm not sure how to do that. So, anyway, all that said, we are still considering this. I probably sound overprotective, it's because I know that I am! I did read some hints/tips for parents having respite care in the home (I can't remember the website right now or I'd link it here). One tip was to create a binder/folder with all your child's info in it for a respite worker unfamiliar with your child (code for an absolute stranger walking into your house). The other was to put keyed locks on rooms (like your bedroom) that the respite worker shouldn't need to access.


If you can't tell I am pretty nervous about doing this. But I know that hubby and especially me need a break sometimes so I am definitely trying to work through this. Do you use respite? Why or why not? Was it difficult for you and how did you work through it?