Friday, November 22, 2013

Breastfeeding and Down Syndrome

Under normal circumstances breastfeeding can go one of two ways: extremely easy or extremely difficult. It seems as though there is no middle area. With my daughter I had the intention of exclusively breastfeeding... but the best laid plans, right? I had crap for nurses. I can say that now, looking back. I had absolute crap for nurses and lactation consultants. I was 21, this was my first child, and neither of us knew what to do. We had the tools, for sure, but I could not for the life of me get her to latch. The nurses answer was to provide me with formula because "a baby has to eat."

With my second child, Joey, nursing was the only option. I absolutely refused to allow formula near him and successfully breastfed him for 22 months. I know, that may seem shocking, but I had my reasons and don't really care how anyone else feels about them!

When Jeremy came along I was determined to offer him the same. Needless to say nursing Jeremy has been a long, difficult road. I have read that initial contact in the hospital (or elsewhere) right after birth is important to establishing a good nursing relationship. Maybe it was the hours we were apart, or the weeks in the NICU that helped establish the current nursing habits.

One thing that makes breastfeeding extremely difficult is Jeremy's low muscle tone - hypotonia. Do not confuse low muscle tone with strength, however. Jeremy's is not affected by severe hypotonia, but where it does affect him is on the right side of his mouth, his core, his neck, etc. Unfortunately babies need all of these parts to work cohesively to nurse successfully. The other thing that made it very difficult was the complete AV Canal heart defect. This heart defect would tire him so quickly he simply did not have the energy to breastfeed and nurse long enough to satisfy himself

I have managed to get (or force, however you want to view it) Jeremy to latch a few times every day, since his surgery it has become somewhat easier. Because I am so adamant that he nurses I have also pumped like a mad woman for 6 months to make sure I had a well established supply for the little guy.
You may be wondering why I am so adamant that he nurses and receives primarily breast milk. Although most folks know breast milk is the best nourishment for a baby, children with Down syndrome are far more susceptible to illnesses, leukemia, digestive issues etc. While there is no guarantee that it will keep all of that at bay, I feel better knowing I have helped in some way. I am also adamant that he nurse from the breast because of speech development. Often children with Down syndrome have a difficult time with speech and speech development. Nursing forces babies to utilize all aspects of their mouths and this in turn helps with speech development.

My goal here is to give Jeremy the best start from all facets of development. Nursing him is only a small step but it has such a huge impact on most early developmental areas children face.

Links to breastfeeding a child with Down syndrome as well as recommendations:
Nursing baby with Down syndrome
WHO Breastfeeding
La Leche League International

Thursday, November 21, 2013

Comparisons... no two babies are alike!

Probably the most difficult thing to get over is that Jeremy will do everything on Jeremy's own time.

 My daughter talked and moved pretty quickly...

and Joey was even quicker... months quicker. 

Jeremy is 6 months (and some change) old and I can count on both hands the number of times he has has rolled over. By 6 months Joey was crawling, standing and 2 months away from walking.

I find myself constantly reminding myself that milestones are just that... milestones. Just because a book or a diagram says that babies with Down syndrome can lag behind by 6 months or more, doesn't mean Jeremy necessarily will, but it also means he could. He has had a lot of things in the way: braces for 23 hours a day for 3 months, heart surgery that has left tummy time at the door for about 6 weeks, and low muscle tone (a common thing with Down syndrome). But despite these roadblocks he has surpassed some expectations - he can sit unassisted in a baby chair, he rolls over even with braces on, he holds his bottle, two days after heart surgery he rolled onto his stomach (in the hospital!), he tries to scoot backwards, and he most recently figured out how to Facetime on the iPad to call his friend in Afghanistan.

I found inspiration very recently from a woman I met at the Down Syndrome Association of Hampton Roads - Step Up for Down Syndrome walk. Her daughter walked up to us, I don't know her age as babies with Down syndrome can look much younger than they are for a very long time, but I think she may be somewhere between 15 months- 24 months. This little girl was so sweet, she wanted a balloon, she said the "baba" and when I handed her one from Jeremy's wagon, she signed (YES! SIGNED!) "thank you." I came into contact with this woman and her family again on Instagram (technology is great!). I never understood the whole #hashtag concept but for fun I decided to #hashtag Down syndrome, Trisomy 21, and the DSAHR - SUDS and she somehow found us and remembered us! I follow her now and watch her daughter daily learn new things. Her daughter follows a sign language program and watches Wheel of Fortune saying the letters to the TV. Little does she know I'm learning from her the great and wonderful things I want Jeremy to be able to do!

While home for his heart surgery my cousin-by-marriage Barbara gave us a set of DVDs to learn sign language - she thought it would be great for Joey to learn... I told her what I had actually learned about sign language and Down syndrome and how awesome it was to have this tool. I don't know sign language, about the extent of what I know is "more," so what am I going to do? Joey and I are going to learn it right along side Jeremy of course!

So what's my bottom line? Even if the odds are against Jeremy, he still deserves the same amount of (if not more) attention and devotion to his early learning as Adalee and Joey received. It will require a lot of tailoring, and a lot of outside-the-box thinking as well as relearning on our parts to help him.

Monday, November 18, 2013

A life changing read...

While we were at Walter Reed a life long friend of mine asked her good friend's mother (who lives in Maryland) to visit us at the hospital. Of everything that happened during this time, this one single visit was the one thing I needed... and didn't realize I needed. It was like my Mom had shown up, but in an alter form. Denise was great. She didn't ask anything of me, she didn't expect anything... she stayed as long as I needed.

She came bearing gifts. The knitted blanket hangs on a wall these days, and the book "Bloom" is well worn, and has been read by many... to include my actual Mom. For one week I spent almost every moment in the NICU, as I sat there I read "Bloom." I cried because I was sad... I cried because I was happy... I cried because I knew it could be a lot worse and I should be grateful it wasn't.

I think what I did wrong, incredibly wrong, during this time was read about Trisomy 21 and "research" everything that could possibly happen. I became so focused on Jeremy's heart, his foot, and Down syndrome... I forgot that I should focus on everything that would be great about him. I worried about surgeries, cancer, learning disabilities... everything became a statistic - 45% of this, 50% of that. It was tiring.

As I read "Bloom" two things stuck in my mind, and continue to stay at the forefront... the kissing spot and when her daughter looked at her that first time. These stay at the forefront because Jeremy has the same kissing spot - the flat spot at the bridge of his nose, and sometimes he looks at me so seriously, its like he is thinking "please love me just as much." The majority of the time he looks at me with a giant smile and it says to me that he knows just how much he is loved.

Those first few weeks were hard. Probably the most difficult things I have ever experienced were within that time. I am so thankful that I had such a good friend in Tara and that I had the chance to meet someone as wonderful as Denise.

When people ask how I dealt with a diagnosis of Down Syndrome I refer them to two things: "Bloom" and "Welcome to Holland".

Friday, November 15, 2013

World Class Traveler!

If you are not familiar with Air Force aircraft... or are too lazy to look it up... this is a C-17 and the interior:

The exception to the interior picture is that the center aisle held no cargo, but rather was transporting wounded warriors as well. 48 hours after Jeremy was born we were medically evacuated from Germany on one of these bad boys with about 100 wounded warriors traveling from downrange, through Germany to the US. I am not one to typically complain, but unless you've given birth, and flown in a jump seat for 9 hours less than 48 hours later, while your milk comes in... you don't know what being uncomfortable is. 

Jeremy was given first class treatment the whole way. He flew in his own incubator to keep him as comfortable and safe as possible. He had a team of four nurses and one doctor (who flew in from the US) escort him the whole way. And because of military rules and EFMP processes, only one parent could escort him. So Joe and I made the decision that I would go with Jeremy, while he stayed with our son... and they would join at a later date. 
Moving is difficult to do under any circumstance. I've done it my entire life. While still at Landstuhl we were told we would have to medivac within a week to two. Within a few hours that changed to a few days. Our time in Germany was coming to a close that summer so we were told that whoever flew with Jeremy would need to be prepared to never return to Germany. I had roughly 5 hours to pack and be prepared to be without anything for 4-6 months, while at the same time get all documentation the American Embassy needed to emergency process Jeremy's paperwork and passport for entry into the US.  

Our first stop was Walter Reed in Bethesda, Maryland. We spent a week in the NICU, waiting for Jeremy's vitals and breathing to level out before transporting him further. The hospital had no idea where we were supposed to go. You see, the problem with moving quickly is that the paperwork takes longer to catch up. I told them we were supposed to be at Naval Medical Center Portsmouth, Virginia... there was no proof on any end that NMCP was our final destination. I think I could have told them we were supposed to be in Hawaii and they would have processed everything to send us there! A week later the Air Force finally verified that we were indeed supposed to be at NMCP and chartered a jet for us. 

 While at Walter Reed the genetic test results came back from Germany: a positive for Trisomy 21.  During this week my husband was finally authorized medical leave to come to the US. Towards the end of the week my husband and son finally made it to American soil, and were even able to pass through Walter Reed to see us before heading to Portsmouth (where his orders authorized him to be). We were lucky enough to have my husband's best friend stationed at Langley AFB (right down the road from Portsmouth), he made the 6-hour round trip drive to pick up my husband and son from Baltimore-Washington International, swing by the hospital, and take them back to Hampton Roads.

That weekend Jeremy and I left Walter Reed on our own private jet to go to Portsmouth.

Wednesday, November 13, 2013


 “A baby is God's opinion that the world should go on.” ― Carl Sandburg

The rest of the pregnancy remained fairly uneventful. I had the normal (used lightly) NSTs, ultrasounds, and high-risk OB visits. At one visit I was told I had too much amniotic fluid (say what!?). Isn't too much of something good? At another I was told I had the perfect amount of amniotic fluid (my thoughts at this: "is it leaking out somewhere cause last week there was too much?") With the back and forth I was again forced to visit Google and the Mayo Clinic. From what I gathered too much amniotic fluid could be a sign of gestational diabetes (negative for that), or genetic abnormalities... or it could be absolutely nothing! I think at this point my heart knew, knew that there was something else with this little boy. My brain said otherwise... often the two don't talk.

I was schedule to be induced at 39 weeks and 1 day. I know "induction" is the equivalent of the f-bomb in some circles, but in this instance it was medically necessary because of the too-much-amniotic-fluid situation. They didn't think he was "eating" and "getting rid of" the fluid the right way.

The day of the induction I felt like I was 90 years pregnant. The hospital canceled my appointment to come in... apparently the L&D ward was filled. To the max. I cried. I was tired. Tired of being pregnant, ready to meet Jeremy, tired of worrying if he was going to survive the whole process... I just wanted him out where I could hold him and know it would be okay. L&D called a few hours later and had a room available, "come in" they said!

At 8 PM the process started. I slept (kind of) the night, and hung out most of the day. About 1 PM the next day the contractions started. We had placed bets with the nursing staff when he would be born, one nurse had 2:15 PM. At about 2 PM I knew he was one his way, the nursing staff told me to wait. I may have laughed at this. At 2:13 PM he was born. I didn't get to hold him, he was taken away... they had to check his heart.

About an hour later my husband still hadn't seen or heard from the nurses and he went to find out where Jeremy went. They took him to a room where Jeremy was having an echocardiogram performed via video teleconference between the staff at Landstuhl Regional Medical Center (our hospital) and San Antonio AFB's Wilford Hall.

The head doctor came to the room I was in and explained a few things: Jeremy's right foot was definitely clubbed, his heart defect was far more than a VSD, and they suspected he had Trisomy 21 because he had too many markers for it, that it could not be "just a coincidence."

I thought to myself, "Okay. I've got this."

What would happen now? The whole focus of the EFMP had been his clubbed foot and if he could receive care in Germany for it. The heart defect was a consideration, but was not what was driving the EFMP at that point. The military had elected to not move us, because there was care for the foot in Germany. But now? There were no pediatric cardiologists that could care for him. Worse yet, they said they didn't know what would happen when he reached one month old when the pregnancy hormones that were keeping his heart function as normal as possible would leave his tiny body.

We spent less than 48 hours in the NICU at Landstuhl, on his second day on earth this sweet child of mine racked up the largest bill for an airplane ticket I have ever seen hitching a ride on a C-17 to the US.

Tuesday, November 12, 2013

A Bouncing Baby Boy!

I have this baby boy... and his smile steals my heart. His favorite things of the moment involve his feet, his legs, his hands, and his ninja-inspired moves when he plays with his car seat toys. 

He sleeps all night, naps during the day, rarely cries, and smiles with his whole body! He's learning how to sit, and has championed tummy time like it is his full time job. 

He has down syndrome. 

My pregnancy started out normal, we had no reason to suspect anything out of the ordinary. Found out I was pregnant right before my husband deployed for the second time of our marriage. I was a little nervous, we lived in Germany and the hospital I would receive care in was a good distance from our house - let alone I also had a two-year old son to chase around! My son and I flew to the US for Christmas so I missed my normal growth ultrasound, but thought nothing of it, why should I? I had had two perfectly fine, healthy pregnancies previously. I had morning sickness, craved sour things, and oranges... I suspected we were having another boy because these were similar to my pregnancy cravings with our first boy and totally opposite from my pregnancy with my daughter. 

I thought I was even doing great, by Christmas I had only gained five pounds! That was awesome in my pregnancy book. When we returned to Germany I scheduled the ultrasound for two weeks later. At 24 weeks pregnant I found out, alone, we were having another boy. Nothing could contain my excitement as I excitedly emailed my husband in Afghanistan to call me as soon as he could. I bought blue balloons, a giant baby gift bag, and a baseball onesie with pants. I taught Joey the rest of the afternoon how to open the bag and let the balloons float out to announce the baby's sex for all the world (or at least our world) to see.

 The very. next. day. the ultrasound lab called me. There was something "not quite right" on the ultrasound, they said. They couldn't get a "clear view of the baby's right foot" and suspected he may "have a clubbed foot" because of the length of his legs when compared, and the length of his feet, or what they could see of the right foot. Clubbed foot? How in the world could my husband and I possibly have a child with a clubbed foot? What would happen? After tearfully telling my husband this (at the time) devastating news, I went to the place where I would find all I needed to know about clubbed foot: the University of Google. After reading, viewing images, and going through a box of tissue I came to the conclusion: "I will accept this no matter what, and he will get whatever care he needs to help fix or make this a liveable condition."

The OB wanted new ultrasounds, so two weeks later I went through the whole hour long process again. Except this time I paid attention. I noticed the technician focused on locating and taking pictures of his right leg (which still remained hidden) and then I noticed something else. The technician took a series of photos, more so than ever before, of his heart. His heart functioning, the chambers, the blood flowing, the sound, the beats.

That same day I saw the high-risk pregnancy doctor, he reviewed the ultrasound photos with me and explained what we were looking at.

When he got to the series of photos of his heart he said he saw a VSD, but that it could still be considered normal at this stage of the pregnancy and there was a small chance it would fully close by birth. He asked if heart problems were genetic on either side, "yes" I said. My mom had a hole in her heart that had recently been repaired. And the clubbed foot? I had an uncle that was born with a clubbed foot. He handed me a packet of information on genetic testing, and the possibility that our child may be born with a genetic abnormality. "Not possible", I told myself, "it was only hereditary, and a coincidence." My husband later agreed. Maybe it was easier to agree, he was deployed after all. In an already stressful environment, he didn't need to think home was stressed out too.

The doctor asked if I wanted amnio. It was out of the question at 26 weeks and it came with too many risks at 36 weeks pregnant, that it was not worth it to me to risk the baby's life, or the pregnancy to find out if he would be born with a genetic abnormality - besides he needed to stay inside as long as possible to hopefully correct the VSD. I elected to wait.

I left with my packet of information, information for EFMP, a tissue, instructions to count kicks more than two times a day... and sat on pins-and-needles waiting for my husband to call so I could tell him this new found information.

By the end of the night the University of Google should have charged me an admission fee.