A few of the families have been reminiscing or examining feeding with their baby that has Down syndrome. I had replied to couple of these posts but then realized it was time for me to put finger to keyboard and document our own experiences with this arena. The interesting thing about it for me is when I started to write about it, it was long, and tedious, and I think anyone who hasn’t been in this situation reading it would be put off by the amount of time, effort and struggle that has come along with it when the history is summarized here. But I’m as surprised as the next mom that there is so much to say about it. And yet I’m not. I think it is the examination of such a basic function in our lives that is long. We spend the majority of our day eating, planning to eat, thinking about eating. Especially when the scope of our thrills as a newborn involve how to become bigger. They eat, sleep and poop, God willing. Most of us are don’t need to examine how this eating and nourishment happens. It just does. Especially by the time we are rested and recovered enough from gestating and birthing our babies to actually reflect on it.
I came home from the hospital after giving birth to Zuzu with a feeding plan and a couple of extremely sore neh-nehs. It wasn’t easy then either. But now 3 years later, what I remember is what I see- a happy, healthy, bounding about faun of a girl. Not how we got here. Time often erases the intricacies and intimacies of our life before we are able to examine them too closely. For the most part that is good, it’s self-preservation. It enables us to go merrily on and think about re-creating again.
The Quail came out 8 lb 12 oz on a frosty Sunday morning in February. A little bit early, but not a little bit light. She came out with a wail much like her sister and we began the long dance between mother and child of learning to nurse. I chose to have her at the same hospital that I had quite by accident ended up birthing Zuzu at. The Lactation Consultants there are amazing. I spent more time with them after Zuzu’s arrival then with her pediatrician. I was aware how utterly consuming and complicated nursing could be due to multiple warnings from mommas that had gone before me. I was fortunate enough to push past society’s conventions and nurse through my pregnancy with the Quail. Lovey and I questioned the notion of doing this and whether or not we should be actively weaning Zuzu many, many times. This wasn’t a decision we took lightly. Of course you can’t know what’s to come while you are planning for it. Zuzu’s continued perseverence and need for connection and comfort is strong. She loved to nurse and rub my swollen belly during those months. And after the Quail came home she immediately sank into a routine of nursing and reaching for her sister’s small hand to hold while she let down the milk for her. It is truly the greatest gift I could hope to witness.
In the hospital, after the Quail’s arrival, before her official diagnosis, the LC came to work with us frequently. Since I had difficulty with Zuzu, I just assumed it was a similar difficulty of getting her to latch and once we worked through positioning we would be set to go. I was armed and ready to adjust her latch as needed to prevent the trauma to the neh-neh’s this time. I was queued to the art of baby language analysis and ready to respond to her neh cries. I had the LC’s number on speed dial and wasn’t afraid to use it. I was prepped for the pain of engorgement and had my little weekend warrior ready to nurse it to a comfortable fullness until the Quail could handle the supply on her own. I had my boppy, my Nursing Mother’s Companion, and my trusty Pump in Style Advanced. I was ready for Lovey to do the middle of the night feedings with a bottle and not afraid of nipple confusion. I had a couple sets of supplemental nursing systems and syringes ready in the event of a rough start. But you know what they say- every baby is different. Yes. The truest, purest, most inargueable statement. With all that preparation- both mental and practical, the Quail still had areas I hadn’t known to account for. Long before we received the Down syndrome diagnosis we received a hypotonia diagnosis.
Let me tell you what should have happened in a perfect world. In a perfect world, the pediatricians or lactation consultants that examined her- and there were a couple of each, should have explained hypotonia in lay terms and brought in their OT or SLP that is trained in oral-motor weakness to examine her and start either a referral to someone to work with us ongoing. They should have been weighing her after nursings to notice that she wasn’t pulling any colostrum out. But it’s normal for any baby to lose some weight after they are born and before the milk came in.
In hindsite I can say that should have been the plan. I guess, really, I wish that plan for mommas that come after me. In some respects there wasn’t an obvious problem. Except this. They did say hypotonia. The pediatrician’s that examined her couldn’t say definitely that she had Down syndrome until a karyotype could be completed. But the 3 things that led them to think she had Down syndrome were: 1. her hypotonia, 2. the difficulty she was exhibiting nursing 3. and the micro-expressions we would witness that bore some resemblance to classic portraits of a baby that has Down syndrome. The LC did print out an article about nursing a baby with Ds and the difficulties of it, an email address for a woman who she used to know that had nursed all of her children, including a baby that had Down syndrome a couple of decades ago and a vague suggestions to be sure to ask for an OT or SLP referral from my pediatrician. I went home thinking there might be problems ahead of us but not really understanding that indeed that was a definitive. Late in the afternoon, the day after we arrived, the LC had given a brief warning that if the baby wasn’t able to eat well then we would be extending our stay in the hospital but that it would be the pediatrician’s call when he examined her the next morning. We were given a stock of newborn bottle caps and extra syringes to work with. Fortunately I had a milk supply already established and my colostrum had already began the transformation. On that first day I was able to pump an ounce at a time and began the routine of pumping out what I could every three hours and trying to nurse the Quail according to a feeding plan that gave me a distinct sense of deja’ vu and a false sense of confidence.
It went like this:
1. Pump for 10-15 minutes to get the let down reflex activated and start to establish a good milk supply
2. Set up a ‘just in case” bottle
3. Undress the Quail down to a diaper and start to wake her.
4. Begin brief oral-motor stimulation exercises such as rubbing the inside and outside of her cheeks, gums and roof of her mouth for a minute or 2 to stimulate her suck-swallow-breathe reflex.
5. Bring her to the breast and attempt to nurse her for 5-10 minutes trying a variety of positions: cross-cradle, football, dancer’s hold
6. If at that point she has not successfully established a latch and began to draw out milk then move on to another method of feeding her so that she won’t be too worn down to eat.
7. The choices are SNS or syringe with your finger inside her mouth to elicit the sucking reflex.
8. Repeat process every 2-3 hours.
9. If she doesn’t root, cry for milk prior to 3-4 hours, wake her and initiate the process on your own.
10. Document the number of wet and poopy diapers daily to ensure she is getting enough nutrition. She should have 6-8 wet diapers and 1-3 poopies each day. If you are not able to get that many call your doctor.
There’s alot of guesswork in those first few days of determining wet-newborn- nappies. We did our best estimations and 48 hours after the Quail’s arrival the pediatrician was comfortable with our level of understanding and dedication to feeding the Quail and agreed to send us home. Other then a few new vocabulary words this was not unlike our experience with Zuzu’s entrance into the world.
It took a few weeks due to a computer upgrade and hospital documentation system changeover for us to get the results of the kareotype. Three weeks later after 4 follow up phone calls to the geneticist and our pediatrician’s office, Lovey and I were having dinner with his parents and we received an early evening phone call from our Pediatrician, Dr. Dean informing us that he finally received the Quail’s FISH analysis back and the good news was it was negative for Trisomy 13 and 18 but did show 50 out of 50 cells analyzed a f inding of Classic Trisomy 21. He started down a litany of expected medical concerns that may accompany the syndrome, hyperthyroidism, hearing and vision loss, the need for routine follow up with our newly established pediatric cardiologist for an early diagnosed small to moderate ventricular septal defect and possible pulmonary hypertension; potential delayed developmental milestones and the possiblity of mild to moderate cognitive functioning that can’t really be predicted this early on. Lovey and I sat on the phone quietly listening together and then I asked for a referral to Babynet to get started finding out what services would be available to guide us through the next 3 years. After we hung up, Lovey and I hugged and I did cry a few tears of anxiety. I tend to run towards the anxious side in general. Lovey went back out to the kitchen to his parents and I called mine who had recently returned to their home in the middle of the country. I distinctly remember a shift happening in my thought process earlier that afternoon as I waited for that phone call. I had been pressing the doctors to get a definitive diagnosis back to us and suddenly, probably about the same time the final fax was received in Dr. Dean’s office I saw the blessing of getting to know the Quail without a diagnosis attached to her. I had been able to spend a few hours actually grateful for not seeing her through the diagnostic light.
Babynet, our state’s Early Intervention service or Birth to Three provider; called back a few days later to schedule an intake, and a couple of weeks later Jodie came to meet us and the Quail. We told her of our main concern of how the first few weeks of feeding the Quail had gone and how we had not yet successfully established breastfeeding and when she drank from a bottle a fair bit dripped out the right side of her mouth. We related the struggle to get enough food in her the first couple of weeks. We had been spending approximately 45 minutes every 2-3 hours following the letter to the plan. Our saving grace was that the Quail was an excellent sleeper. So after she ate, whether it was due to her exhaustion from the nursing session, regular newborn sleepiness or the breastmilk jaundice she had for the first month, she always went back to sleep easily. When Zuzu was home her first week we had done a similar plan but she was mostly nursing and we were using the SNS for a couple of feedings with Lovey during the night so I could rest. During one call to the LC after the first week they pointed out that the SNS was really only for the first 5-7 day to get started. After that point the amount of milk needed with each feeding couldn’t be sustained with the SNS. It was about this point with the Quail as well that feedings were becoming too drawn out for us to continue our current plan. At the end of the first week she was staying latched on my breast and making a nursing motion long enough to look like a full feeding and acting contented mostly afterwards- well actually wiped out would be more accurate. After one day of just having her nurse she proceded to not poop for the next 36 hours. At that point I realized that although she was latching she wasn’t strong enough (the hypotonia at play) to draw the milk out. I panicked and got out my box of bottles from Zuzu’s early days. We started with a Dr. Browns which had previously been the bottle de’jour to coordinate with nursing. It was too difficult for her to get milk out of. After fumbling around briefly with a series of other bottles that were either too difficult or the milk leaked too eaily out of her mouth we settled on a Soothie. She still leaked milk but it was better then the alternatives. She gradually sped up her drinking in the next week and we were able to get 3-4 oz in about 20-40 minutes. I was still attempting to nurse but the frequency was dropping off as my success plummeted.
Jodie referred us to an agency that had a couple of SLPs who focused on feeding issues in newborns and they set us up to come in fairly quicky, still by this point we were 2 months into it. We met with the SLP and explained how long it was taking the Quail to drink, the milk leaking out while she did and the lack of success in nursing. She also by that time had begun throwing up frequently and in what looked like large amounts with almost every feeding. Both immediately after and throughout the following hours. Fortunately she wasn’t distressed or obviously pained by this. Unlike her sister who started reflux meds at 3 weeks due to her pained behavior, arching away from the bottle and tears (hers and mine) with each feeding.
The SLP’s first concern was if drinking from a bottle; which is easier then nursing, was causing the Quail any distress. It is common in babies that have heart conditions to have their oxygen saturation level drop while drinking as well as their respiration rate increase. We started each session with the Quail drinking her bottle while hooked up to an oxygen saturation machine. Fortunately for the Quail she didn’t have trouble with this. The heart condition made the SLP pretty nervous and she consulted with the cardiologist who reassured her that there was no trouble with the Quail learning to nurse. The other main concern with a lot of babies with heart conditions is their growth rate. And with the Quail throwing up so frequently as well this could have been a major factor. Fortunately her growth has always stayed consistently between the 25%- 50% average on the standard growth charts. For a baby that has Down syndrome and a heart condition and refluxing behavior, that is really phenomonal. We spent the next 3 months with every other week appointments with the SLP essentially doing the exact same thing. I would ask each week about learning to nurse and she felt we needed to get to the point where the Quail would clearly not need open heart surgery to repair her VSD before moving on to practicing that. I continued to ask and she continued to say the same thing. I finally asked outright for her to give me a list of exercises that would teach the Quail to nurse. She said that there weren’t any.
At that point we decided to take a break from the sessions for a couple of weeks and I started asking around to other mommies if they had suggestions for ways to help us learn how to nurse. More to come on that and how we spent the last 3 months to come later this week.
Right now I have to go put up the night’s pumped milk, lay the baby down to bed and nurse the toddler. And I feel so very blessed to be able to do just that.
October 4th, 3pm, the phone rings and a secretary from Greenville Memorial Hospital, tells me that they are cancelling my induction for tonight. The moon is full, the beds are all occupied and basically there is no room in the inn. I’m paraphrasing of course. I was instructed to wait for a call from my doctor for further instructions. Dr. Bradley, the one obstetrician in the practice I hadn’t met face to face and who’s ego preceded him called 4 hours later saying there is room at St. Francis Women’s and Family Hospital on the Eastside of Greenville if my bag is packed and I want to change locations. It is, I do and we stop for a snap of the last moment of my heart residing within me in the door frame and head out the door. I arrive, get settled in with an Ambien, a turkey sandwich, a kiss and wish for good rest from Lovey and a carefully placed cervidil. We drift off to the sound of my and Zuzu’s heartbeats entwined and amplified through their monitors. The next day she made her grand entrance at 1pm. I spent the next 9 hours attempting to nurse her. At 10 pm that night the angel of a lactation consultant arrives and starts arranging pillows, hands and the baby. By that point I already had severely traumatized myself and was in tears and tears. So a pump was brought in to try to harvest the colostrum and give me a little relief. The next morning, Carrie the LC came back to us to check on our progress. She commented that nowadays it seems to be mostly the teenage mothers that instinctively know how to nurse without instruction. That the rest of us, ahem, slightly older, more mature mommies tend to need more help, positioning and training. Over thinking it perhaps?
The grandmothers were so kind to each in turn extend their stays to help care for us, our home and this sweet baby. It was boot camp that first few weeks and fortunately for me everyone who came in tern to stay at the house was more than willing to step in for holding duty. Friends and family alike. Lovey, Zuzu and I are eternally grateful to you all. It really is a time like this that illustrates how you can’t and shouldn’t go through life alone. It is so very necessary to be able to reach out to those around you and let them care for you. It only serves to strengthen you and the bonds around you. Those first 3 weeks Lovey, Nana, Gramma and I took shifts at night with Zuzu using the SNS and later a bottle of pumped breastmilk during the night. I picture it now and everyone trying to stay up and hold Zuzu upright so she wouldn’t cry and can see the red flag that she clearly needed reflux medications at the time when she slept propped upright against our softly snoring selves.
Around 3 weeks into our new lives I was still fretting over my new responsibilities. I remember dear Julie talking to me late at night and early in the morning and validating that if one bottle a day wouldn’t hurt Zuzu then do a second bottle so I can get some rest. Our pediatrician at the time, also a young nursing mother but miraculously full of energy and strength validated the same and also that if we needed to hold the baby or co-sleep we should do whatever works, safely, but whatever works. I struggled with the decision to co-sleep and still do, but that’s another story entirely. My dear mother sat down with us; and as I write this with the wisdom and distance of 3 years of having my own heart living outside of my body I can smile at her concern and desire to stop her own small one’s pain and struggle. She helped formulate a schedule of bottles versus nursing to try to ease some of the pressure off of a sobbing me. That is all it took a little hormone control, a little easing of the pressure, validation and caring from my own mother and suddenly it was fine. I didn’t need the schedule and I was fine nursing Zuzu night and day with just one feeding done by Lovey and a bottle. I still believe that was a large part of securing their strong bond. By this point I had physically healed some, the reflux medications started to ease off Zuzu’s pain and my own medication helped to start regulating my hormones so that I could see that life would go on one day at a time, not just one feeding to the next. Zuzu started to smile and respond to us and light up our worlds.
18 months later she started to wake every 2 hours to nurse. At that point I hit my second wall and I did actively nightwean her. It took one night of telling her no and some perspective in my phrasing. We changed to an explanation that the neh-neh’s were sleeping and they would wake in the morning to nurse her. She cried that first night for an hour, the 2nd night she woke to ask if the neh-neh’s were sleeping, if the TV was sleeping and then settled back in between Lovey and I herself till morning. This went on for a week and then she ceased to wake during the night.
Ordinary Afters... 