Missing Post?

Has anyone ever had a post disappear from their blog? One of my first posts was a few short paragraphs about breastfeeding Goldie. I went looking for it this morning and it is gone. It still shows up in my reader, but when I click on it, I'm taken to the message "that page doesn't exist on the blog ..." 

A friend sent me a link to the Breastfeeding Cafe blog carnival. Today's topic is breastfeeding in special circumstances. So, maybe its time for me to re-post or write something more detailed and informative. 

Hank Louis' Birth Story

This is the fourth, and I'm expecting final, birth story I will write. As I was jotting down the details of Hank's arrival, my daughters were eagerly asking about their own births. I told them that, yes, I had wrote down each of their stories. I can imagine them comparing the stories to those of their own babies some day. (Except my oldest who says she is going to foster/adopt and would prefer not to be pregnant. Watching your mother puke for months on end must have that effect.) This raised some questions of my own. Will Hank, as a man, ever care to read this story? Will I be sharing it with his wife, who will then think I'm one of those natural childbirth freaks? I expect that Goldie will enjoy reading her story. Do I share the whole story with her? How will she feeling reading about the diagnosis and my reaction? Hopefully, I have a few years to think about it. I'm going to trust that the answers to these questions will reveal themselves to me when the time comes. Life has a way of preparing me for what comes next.

Enough touchy-feely stuff, its time for some statistics. Over 4 million babies are born each year in the United States. Hank was one of the 1% that was born outside of a hospital. Of that 1%, only 27.3% are born at a freestanding birth center. He is my only child to not be born at a hospital. I drove 45 minutes each to way to every prenatal visit and took a lot of flak from well meaning family for choosing to have a midwife attended birth. Even my husband was not completely sold on the idea and let everyone know it. He knew that the research supports my position that it would be safer, but still worried about the "what ifs". I could do another post just on the advantages of using a birth center and compare my experiences with 4 different birth attendants.

Now for the good stuff. To save time, I tried to stick to the important parts and didn't add a lot of detail.

Monday, December 28, 2009
3:00 I'm officially 41 weeks, so I need to have an ultrasound and a non-stress test. The ultrasound will measure the amniotic fluid and the NST will listen to the baby's heart and make sure he is moving around.
The ultrasound revealed a nuchal hand (the hand is presenting next to the head) and that he was face down. I wasn't too surprised, he was waving hello to the midwife during an internal at 38 weeks.

5:30 When we get home I fall in the driveway, twice. My husband orders me not to get up until he can help me.

8:30 I start having contractions. I pack Hank Sr's lunch for work that night and get the coffee pot set up for him. I assume the contractions will stop once I lay down. Just like they have for the last 3 weeks.

9:00 I lay down to watch tv with the girls

10:00 I try to get some sleep

11:00 The contractions are getting stronger and keep waking me up. I decide to go upstairs to wake Hank Sr up. It takes me 20 minutes to talk myself off of the couch. Between the fall and the labor, it hurts to move.

11:20 Hank Sr. is up pouring himself some coffee and I'm calling the midwife. Hank calls my mom and stepdad to come watch the girls.

11:45 We head out into a snowstorm to the Midwife Center. This is my 3rd baby born during a snowstorm. I kept asking Hank to slow down because I was afraid we would slide off the road and get stuck.

12:40 We arrived at The Midwife Center. Kathy was the midwife on call and Gretchen was our nurse. In the dark, I could see the lights of the Forest Room waiting for us. Kathy checked me and I was dilated 4cm, then Gretchen listened to the baby's heartbeat.

1:00 Hot tub anyone? I lowered myself into the warm jacuzzi tub and found instant relief. I hadn't been this comfortable in at least a month. Water is a better analgesic than anything I've ever gotten at a hospital. Gretchen brought me an english muffin with pb&j and a glass of gingerale. She continued to check the baby's heart tones, reminded me to drink, and asked if I needed the water warmed up. She also showed my husband how to apply counter-pressure to my back. During a contraction, the midwife asked my husband if I always this quiet when I was in labor. He made some smart remark, I laughed and told her yes. It's true, I was completely silent other than the sound of my breathing.

2:00 The contractions got much stronger and the baby moved down even further. We decided it was time to get out of the tub. I paced the room, leaning on my husband during contractions. I tried leaning on the birthing ball and began to feel some pressure. I wasn't ready to push, but started feeling antsy.

2:15 I asked Kathy to check me again. I had reached 7cm  I knew from my previous births that if she broke my water I'd be holding my son within 20 minutes.

2:17 I decided that 41 weeks was long enough and asked the midwife to break my water. As I had anticipated, the contractions were overwhelming. Everyone kept reminding me how great I was doing and that it wouldn't be much longer. Laying on my side, I began pushing when I felt ready. I really wanted this to be over, so I didn't stop pushing until they reminded me to breathe. I know it didn't hurt this much with other babies.

2:32 I pulled Hank Louis up onto my chest and he raised his head to look at me. His daddy and I looked at each other with mutual joy and disbelief.  In 15 minutes I went from 7 cm to holding my baby boy! Kathy explained that he was born with his hand next to his head, so I'd be a little sore this time.

We spent the next hour chatting while Hank nursed. I now know what the expression "born to breastfeed" really means.  The cord stopped pulsing and his daddy got to cut it.
He weighed in at 7pounds 11oz and was 20 1/4" long. Gretchen cooked a breakfast of eggs and toast for us then left us to get some rest. Of course we couldn't sleep, but we did enjoy an nice snuggle, just the three of us. I've know that you can't always get what you want in life, but this time I did. Hank was blessed with a birth that went just as his mama had planned.

It's 2010 People!!

I can't recall if I've mentioned, on here, that I volunteer helping breastfeeding moms when I'm supposed to be cooking dinner in my spare time. I may only get one or two calls a month. Unless, that month has a major holiday or I have just given birth. Then my phone will ring nonstop and I'll have to order my children not to answer any number they don't recognize. (Please don't think I'm horrible, its just that it took twice as long to convince Hank that its bedtime than it did to write this paragraph. And I can hear he still doesn't believe me ;) Goldie blessed me by going to bed at 8, which means she'll wake up screaming any second. See, I need every minute in my day.)

Yesterday I decided to answer a call that I had already ignored once. Well, I must have taken too long navigating the farm animals and Zhu Zhu pets because I missed it again. So, I did what I never do, and called this unknown person to see what they needed.

It was indeed a breastfeeding help call. A grandmother calling for her daughter. She began describing a baby that, although full term, had medical complications and was transported to a NICU in a larger city. She seemed unsure of what to tell me or where to even begin. The mother had an emergency c-section and the nurses had refused to show her how to pump or get a lactation consultant to see her. That's when my DS mommy radar went up.

Me "I hope you don't mind me asking, but does the baby have a suspected diagnosis. Its unusual for a mother to not receive help after several requests."

Baby's Grandma "Well, yes he does."

Me "Its okay, I understand, I have a daughter with Down syndrome"

BG "Oh, that's what they think he has. You really do understand. I'm so glad I called you."

Do you get what happened to her daughter? The nurses decided that because her baby has DS "he won't be able to breastfeed anyway" or "it won't matter". Then again maybe they were too busy feeling sorry for her and didn't want to "burden" her with pumping for her baby. This story is very familiar to me. I have a friend who experienced the same thing almost 4 years ago when her daughter was born. It was a different hospital in a different state, but the same attitudes. That talk a friend and I gave last year, we need to keep giving it.

Measuring Growth

I take Goldie for her well checks, they measure her and plot it on her chart. I write the number down and plot it on my charts for her at home. Sounds simple enough. Apparently not.

Last September (18 mos) Goldie measured 32" (81cm). In March at her 2 yr appt she still measured 32". The ped noted that they must have measured wrong at the 18 mo appt because she jumped up on the curve and was now back where she should be. As spring turned to summer and we had a lot of appointments lined up for Goldie there were many more measurements taken. Always 32". Just for kicks, I measured her myself one day. Lying down, like at her 18 mo appt. I got 34 1/2" (87.5cm).

Mel commented on my last post that maybe Goldie was having a growth spurt. When she felt heavier the other morning and her pj's looked shorter I measured her again. I laid her on the hard floor with her head against the wall. I got 35 1/2" or 90cm. I waited a couple days and measured once more. Still 35 1/2".

We were having trouble getting Goldie's last blood work results from the lab, so I had a call in the ped. I asked about measuring growth when I spoke with her. I thought maybe Goldie's low tone made her shorter when she stood up. She explained that your joints compress when you stand up and they have had children "shrink" when they began measuring them standing up. Glad I asked! I gave her the measurement I had for Goldie and she wrote it in her chart.

Speaking of charts, what do you use? We use the DS charts and the WHO charts. WHO charts are based on the growth patterns of breastfed children. The reasoning for not just using the DS charts are that if they are based on children who may have less than optimal growth for any variety of reasons then they may not show a slow in growth as obviously as the WHO charts. If we want Goldie to grow as typically as possible then we need to compare her growth to a larger population of children. I forget where I first read about this theory, but it made sense to me.

Swallow Study

Hank and I took Goldie for her swallow study today. She did incredibly well! Which is good and bad. Its good that she is capable of swallowing safely, because she did it for them. But, I swear she aspirates 90% of the time she has a drink. So they managed to catch her the other 10% of the time. They think it may have something to do with her head posture, so now I have to keep a journal for a week so we can figure out what will work. Her head needs to be tilted down through the entire suck and swallow when drinking from a straw. I wish they had thought to have her drink with her head up while they were doing the test. Oh well.

After we got to the van, Hank tells me that they asked him if she had trouble sleeping. He said, "Yes, she has a sleep study next week" They said to let them know how it goes. I'm wondering if they saw some reflux and that led them to ask about her sleep? I'll ask when she calls next week.

Another good thing, there was no negativity toward Goldie still breastfeeding. She asked if I planned to wean her or continue after the baby comes. I told her I would like for Goldie to keep nursing after the baby arrives. She wrote it down in her paperwork and moved on to the next topic. It was nice not to have my decision questioned or looked down on.

As for myself, I started taking Unisom on Sunday and I feel like a different person. Not back to my old self but almost!

Goldie, sleep, ENT

The morning sickness has left me feeling blech all morning and most of the day. Never the less, we managed to plant the rest of the garden and move the peeps into the chicken coop this week. We've had some great weather.

I usually blog at night after Goldie goes to sleep. That isn't working so well anymore. I'm ready for bed shortly after she is and I've really been trying to get her into a better nighttime routine. I bought her a sound machine (I love the rain setting) and we've been using melatonin before bed and once during the night. This has helped her sleep for 4 hours straight, until 1:30 and then she gets up 1/2 as much from then on. The sound machine has helped her with putting herself back to sleep. So has keeping the room very dark.

It was easy to find research showing that children with learning disabilities have trouble sleeping and visually impaired children have an even greater rate of sleep disturbances. However, there doesn't seem to be any research on why, except for children with visual impairments. A child with a VI may not see enough light to regulate their sleep cycles. At first I thought this could be Goldie's problem, but she wakes up as soon as the sun peeks over the horizon. Sometimes sooner. Like 4 am. We call her "The Rooster". Or maybe she actually hears our rooster crowing at that hour. Hmmm. Anyway, after reading this article and doing some more research we decided to go ahead and try the melatonin. I bought her a liquid so we could find the smallest effective dose. She is no longer waking every 45 minutes and does appear more rested, but we still have some more work to do.

I took her to the ENT this week. He said she would benefit from a sleep study and that even if it is negative for sleep apnea it would help us to have that ruled out. He also ordered a swallow study. I brought every single cup we've tried teaching her to drink from just to be sure I didn't get blown off. He is positive she is aspirating and that is why she doesn't want to drink anything. He didn't know why she doesn't seem to be aspirating when she nurses. She certainly doesn't have an aversion to that! LOL! I'm guessing it has to do with positioning.

Goldie's OT is on maternity leave so she has someone new for the next 3 months. I really like her, too. It's been nice to have a fresh set of eyes watching Goldie and offering new suggestions. I kinda feel bad because Goldie seems to like her much more than the regular OT. She is very laid back and just "plays" with Goldie. I don't think Goldie has even realized that she is a therapist, yet.

Tired, cranky, aggitated

That's how I feel lately. I'm annoyed with pretty much everyone and everything. I think it stems from 1st trimester tiredness and a 2yo who won't sleep. I swear if I could even get a decent nap I'd be a new person.

One of the things that hacked me off this week was our visit to the DS Center. I was left with instructions to give Goldie cow's milk, let her cry it out, and a prescription for Miralax. Oh yeah, I almost forgot the flushot. Because a hurriedly manufactured vaccine has to be soo much better for her immune system than breastmilk! Not. I got the kids with DS have weak immune systems lecture. Yeah, well noone told Goldie that and I really don't want her to know because she hasn't been sick in 4 months and has only had antibiotics twice. And I didn't ask for advice on weaning or nutrition so I don't know why he felt compelled to suggest cow's milk. I did ask for information on how Down syndrome could be affecting Goldie's sleep. After the CIO speech I explained that it would be cruel to let a child CIO ever without first looking for a medical reason for nightwaking! He went as far as to ask why I made an appointment with an ENT. The reason should have been obvious, to have her adenoids looked at and talk about sleep apnea. The bottom line is he just doesn't have enough knowledge or experience when it comes to Down syndrome. The suggestions he gave me I could have gotten from any general practice pediatrician.

If you've made it this far, thanks for reading my rant. The other think that struck me when we when we walked into the reception area were the bulletin boards plastered with research study opportunities for Autism. I think this is great, Autism affects a lot of kids. But, there was nothing for DS. (The NIH just doubled the amount of research funding going to our Children's Hospital. I asked and No none of it will go to the DS center) Then, when I suggested checking for vitamin or mineral deficiencies when writing up Goldie's bloodwork I got a big no. "There's no reason to do that" I left with the overall impression that because Goldie has DS I'm supposed to accept its effects on her and not try to find other causes or solutions. Well, that's not my style. So I've been looking for my own answers. I've found a lot of good info on sleep that I'll post about later.

New Life

I've been marveling at the new life spring has brought to our home and property this year. Goldie's tulips bloomed again. They weren't as eye catching as the first year, but I still enjoyed them.

Hank bought me blackberry, raspberry, and blueberry bushes for Easter. We planted them where the chicken coop was last year. The soil there should be nice and fertile.

The asparagus I planted last year is coming up! I love asparagus and now we will be able to eat it from our own garden! Hank was laughing at how excited I got over seeing the first skinny shoots.

Two weeks ago I planted half of the garden. (The half Hank didn't dump clumps of cow manure on.) I planted lettuce, cabbage, onions, and sugar snap peas. They will all do well if we get another frost. I'll plant more after Mother's Day.



We surprised everyone with the news this week that Goldie is going to be a big sister! It looks like the girls will be getting a new sibling for Christmas. I couldn't have planned that if I tried. Not that we were trying or planning. I admit to crying a few frightened tears. Goldie is still nursing a lot and doesn't sleep for sh*** at night. Because of Hank's work I'm on my own when it comes to nighttime parenting. (It just wouldn't be good to have a sleep deprived, gasoline tanker truck driver cruising the roads.) So, this means I have to get my act together and figure out how to help her sleep better on her own. We have an ENT appointment this month and plans to rearrange the girl's bedrooms. Any gentle parenting ideas are welcome. (We don't CIO.)

The girls are excited. They are hoping for a brother. I explained that I don't think those odds are very good. I'm so happy that Goldie will have a sibling close in age to her. Out of all 4 children, these 2 will be closest in age. Most of our friends and family are happy for us. But, there's always that one person who has to see the dark side of everything. It's a shame, really. I'm looking forward to seeing our family grow. I grew up with only 2 cousins that live 600 miles away. I always wished for a bigger family, especially around the holidays. I missed having kids to draw, sing, or play dolls with. As an adult,that has become my wish for my kids. We can't give them cousins, but we can give them each other. I just hope that whatever life brings their way, our children are able to go through it together.

Saturday was awesome!!!

Whew! This weekend wiped me out. Mentally and physically.

Friday night I got together with my friend, Sarah, to go over our presentation. Sarah is amazing, she wrote most of our presentation and really contributed so much with her experiences. She was very impressed by the pictures some of you sent! These images were an integral part of the presentation. I wanted everyone to leave with a picture of a baby with DS actually breastfeeding. Too many people don't think our babies will really be able to nurse. I think this can be a self fulfilling prophecy and I wanted to change the picture they may have had in their minds.

Saturday morning we spoke from 9 until noon on the impact of a Down syndrome diagnosis on breast feeding at the LLL of Western PA Area Conference. We explored both the emotional and the physical difficulties that can be encountered. It was an amazing morning. The women we spoke to had a lot of questions. I'm glad we were able to provide them with accurate information. There was even a genetic counselor in the audience! She fielded some of the technical prenatal diagnosis questions for us. I even asked her a question or two myself. There was a great discussion on the 90-92% termination rate of babies with a prenatal diagnosis of DS. That shocked everyone. During this part of the presentation were pictures of Sarah's daughter. I wanted to get past the image of a fetus and show the child with Down syndrome. I'm hoping it was subtle, yet effective.

We provided information about the various health issues that can be present, if they would affect breast feeding, and how breast feeding can help. We explained that a pumping mom is a breast feeding mom and really needs to be supported. My co-speaker brought up a great point about kids with immune system challenges and how to make meetings a friendly environment for them. One way is to have sick policies so they won't be exposed to a virus that could render their child ill for weeks.

I learned something. One of the women was a postpartum nurse at a well known women's hospital. She explained that babies with DS born at that hospital are sent to a separate floor. (Huh?) They don't want the mothers to see the typical babies and be sad. (What?) I found her later in the day and asked her if I had this right. Yes, they are not sent to the nursery on the postpartum floor. But, I'm still confused. I thought they had rooming in. I take Goldie to the DS clinic next month, maybe they can explain it better.

We ended up with almost double the people we had anticipated. Good thing I made two packets for each person. The packets included brochures for local and national resources and support agencies, general Down syndrome information and health care guidelines, information about heart conditions, breast feeding articles, people first language,the beautiful DSANV calendars and where to find even more information. DSRTF sent me a huge box of newsletters and DSAV sent some brochures. I'm still waiting to hear from the groups in western PA that I contacted.

The rest of the day was spent chasing Goldie around a hot stuffy hotel. Our weather has been a lot warmer than normal so the indoor poolside lunch was like eating in a sauna. While I drank a lot of water, Goldie was too busy to be bothered by drinking or nursing. I think she was dehydrated the next day, probably from sweating. Go me. Only I can bring a nursing toddler home from a breast feeding conference dehydrated. She's back to her signing dancing self now!

Oh, I almost forgot, well actually I did. The gift basket I put together daaaays ahead of time. I left it sitting in our enclosed porch where the kids Goldie wouldn't get it. sigh. If I had put it together at the last minute I would have remembered it. That's what I get for trying to stay on top of things!

I'm speaking on Breastfeeding & Down syndrome, wanna help?

I've been consumed with a presentation I'm doing with my friend, Sarah, this weekend on Breastfeeding and Down Syndrome. We are in our final stages of preparation and I'd like to add some pictures to a Power Point presentation that she did. So, if you have any pictures of your child with DS breastfeeding that I could use, I would be soooo grateful. I can't guarantee that I'll have them added in time, but we are hoping to present this session again in other locations. Life with 3 kids has a way of going off track at the most inopportune times.

Thus far, I have a gift basket for children of all abilities put together for the silent auction and will be assembling folders of information, local and national resources to hand out to attendees. A BIG THANKS to Rebecca at The Bates Motel for hooking me up with some awesome 2009 DSANV calendars. I'm hoping this is a great way to reach people who are working with new moms and babies. I see a chance to advocate for them in their earliest days!

If I have time, I'll add a picture of the basket and folders tonight. I keep finding more articles to add and have ANOTHER trip to Staples planned for copies.

Just to Clarify

I just reread my Mim Mims post and hope I didn't offend anyone. I struggle with being pro-breastfeeding without seeming judgemental towards moms that aren't bf. I know it isn't black and white. I've become very frustrated with doctors that refuse to educate themselves so that they can truly support breastfeeding mothers. I went through 5 pediatricians in 3 years before finding one that trusted me as a mother and believed breastmilk was the ideal food for babies.

So, when I wrote that failure was not an option I was writing from inside my head. I don't consider other moms failures. But, that is how I would have felt about my situation. I know as mothers that we do the best we can with the information we have available at the time.

After Goldie was born breastfeeding gave me something to focus on. I felt like it was the one thing I could do for her. It gave me a sense of control. It was also what was familiar to me. I wanted mothering Goldie to be like mothering my other babies. I would have grieved tremendously if Goldie hadn't been able to nurse. My heart goes out to mothers who struggle with this. Mothers who pump for their babies have my highest respect. They are doing double duty to give their babies the benefits of breastmilk.

I would love to hear comments on what did and didn't help mother's wanting to nurse their baby with down syndrome. I'd love to see better information available to future moms.