Thursday, January 31, 2013

3 Months of Johnny!

Johnny,

Today you are 3 months old! It is hard to believe that just 3 months ago I was laying in a hospital bed being monitored like crazy, given oxygen on and off, and being moved into different positions to keep your little heart happy until Dr. Norton could come in and start the induction process. I was so excited to meet you, so happy to be anticipating that moment of getting to hold your little body, and letting all the mommy love finally wash away the incessant worry I had over your pregnancy. Call me crazy, but your birth experience was the best yet for the complete opposite ends of the spectrum from before and after you were born that kind of mimics my feelings as well. In the moments leading up to your birth it felt like all hell had broken loose, like I was on edge, like I was a caged animal ready to rip anyone to shreds, there was chaos and things got hectic...and then you were born...and all of that melted away into absolute peace (and sobbing from me), but things automatically became still, and clear, and peaceful. Thank you for that!

This month has been an explosion of you doing more and more and being interactive!!! But we should start with the basics. You still sleep a lot in the day, usually getting an hour to two hours between each feeding. Occasionally in the evenings you will stay away between feedings, but that is a shorter time span anyways. You like to cluster several small feeds together at that time and will goof around with the bottle. Mommy tried to nurse you the other day to see what would happen and was pleasantly surprised with an awesome latch. You still won't work hard at it though so not much happened, but I was pleased you didn't completely reject the idea! You sleep great at night, from 10:30 or 11 until 7:30. You take awhile to get into deep sleep and we can hear you fidgeting and grunting to get comfortable in your bassinet in our room. In the morning when you wake up, it's so hard to take you seriously that you are hungry because you are so patient to wait while I pump. I will hear tiny little cries almost like a "Hello? Don't forget about me!" and those are usually spaced out a bit. You like to spend time in your swing and Mommy tries to put you in there for a longer afternoon nap so she can get a little bit done while your sisters sleep.


You are rolling over from side to back and side to tummy and will pull your torso in either direction as I help guide you into rolling over from back or tummy. You tolerate tummy time fairly well and will lift your head up frequently. Sometimes your head is still a little wobbly and sometimes you carefully look around and take in all of your surroundings before plopping it back down on the mat. Many of our friends and family have commented on how wiggly you are becoming, so typical of a little boy to always be moving, kicking, and lurching around. In your therapy, we have been working on sitting you up more and more. Obviously this is supported sitting in our arms, but I kind of regret exposing you to this new upright lifestyle. You seem to like being vertical a lot more than being horizontal and that means holding you up a lot more or propping you into the crook of the sofa (with supervision of course). You will slowly slide down from this position in the sofa or sometimes lurch forward and land face first into the cushion, but you much prefer it to laying down. 



You are very verbal and will talk to us as we play with you or hold you. It's so funny to hear your little man voice, definitely deeper than the girls, more guttural, and still having that baby raspiness. You are so expressive and started smiling more this month, deliberate smiles to reward people that are making you happy. Your smiles in your sleep are sweet and small, your smiles when you are awake are large and feel so pure that you are so happy. Yesterday when feeding you a bottle, Mommy was looking down at you and you paused, gave me a big smile, and let out a tiny little laugh. You must have been very satisfied with that meal! Your eyebrows are very expressive and you will raise one or both of them in response to things we do or you see. It is so funny to watch those tiny, translucent little hairs arch over your eyes as if to say "Are you kidding me?"





Johnny, I would say that I hope you know how much we love you, but I really think you know more than we do how much we love you. You never have that baby expression in your eyes that says love me. Instead you seem confident in the fact that you are loved beyond measure. You seem calm and collected and to me, you almost project an aura of knowing that you are something special. It is definitely an answered prayer as when we were learning about your diagnosis, I would lay hands on my belly and pray to God to love my child extra for me because I wasn't sure how to love you. God definitely worked on me and my heart has extra beats pounding away just for you and you are so completely loved and desired. You have been such an amazing addition to our family and I thank you for three wonderful months!!!

Love,
Mommy and Daddy

Wednesday, January 30, 2013

Simply good

 Sometimes we have magical, fairy tale, storybook good days...days that involve donuts and coffee, perfect weather, museum trips or zoo time, lunch at a favorite place, and a day filled to the brim with friends. These are days that we all imagine as being good days, days that go off without a hitch and you can brag about..."look at what we did". And you look back at these days as being your favorites...as being good.

Sometimes though, days aren't as adventurous, are more mundane, are over simple...but those days can be as good.

Days that involve a new fence in the back of the yard that means play time for the girls. Play time that hasn't happened in months because of an extremely ferocious dog who would throw himself against the fence trying to get to us and when that didn't work he would eat (yes, eat) the fence. This was not a dog who wanted to play with us, this was a dog who has a reputation in our neighborhood for aggressive behaviors towards boys and men very much more grown and very much larger than my sweet peas. Out of our safety we have been forced inside...but now...just look at that pretty fence!

Days that are so windy, leaves end up blowing inside your house from the open door, but along with that comes squeals of laughter and giggles. Days that were made for bubbles, especially the good quality bubbles we found in the top of our closet, that stayed together in groupings of ten to twenty and danced to and fro in the wind, making bubble chase time all the more exciting. Days where the only things you need outside is a big red ball, lots of leaves to throw around, and your sister.


Days that involve clear blue eyes peeking out at you from the play set. The same blue eyes that look up at you as you teach her to swing by herself, coaching on "legs up, legs down, legs up, legs down". The same blue eyes that sparkle as she says "Chase me" and then collapses into a heap on the fallen leaves because she would really rather be tickled. 


Not unlike the big brown eyes that follow where everyone is going and carefully evaluate who is going to have the most fun for the next few minutes because that is where she wants to be. The big brown eyes who pour into everyone she meets with love and absolute adoration. The big brown eyes who confidently take everything in because she knows she is something else!


Days that involve working on therapy at home, not unlike what you would do with your children anyways to coach them along in their development, but being more deliberate at it, taking your time with it, subtly correcting small movements that could make a huge difference in meeting milestones. Days that mean cheering your little man on with each head lift, each roll from side to back or side to tummy, and each bat of favorite toys. Days that mean you reciprocate sounds from an increasingly verbal baby boy. Days that involve recognizing tired signs and needing to be snuggled signs, rewards for all that hard work he has done!


Days that involve your two favorite girls in the world showing complete adoration to one another...


and to your favorite boy...

 and to you...in the form of a freshly picked bouquet of flowers for the dining room table.

Days that involve dinner with grandparents and fries so good you have to use one hand as a "helping" hand to shove that fry in your face...


 And long strings of spaghetti that taste all the better when twirled on your own...and being adamant that no help is needed.

Days that are just simply good...or simply, good...whichever it is...I'll take it and soak it in because it is good.



Tuesday, January 29, 2013

Favorite game

The girls have many games that they play and they pretend really well together, but one in particular is to play nap time. They will frequently get their nap mats from school, our big play mats, pillows off the couch, or throw blankets and arrange them on the floor to pretend to take a nap. They will make their little bed, get a stuffed animal, and "go to sleep" for a few minutes before popping up and saying "Good Morning!". It is funny to watch because they will repeatedly go through this process for 30 to 45 minutes before moving on to a new game. They especially love playing this game at Dee and Doc's house because they get to play it in the big bed in their grandparent's room. 

A funny new addition to the play time is Mac tucking Keegan in while explaining what they will do after nap. I have had to work with Mac on getting her to rest a bit during her nap time and can get her to sleep a bit longer (rather than playing or reading quietly which is fine too) if I tell her all the good plans we have for after nap time. So Mac will explain some other pretend element of their game as she wraps blankets around her sister. Even funnier is the fact that they frequently "plan" on going over to Grammy and Grampy's house after nap...Grammy and Grampy are one of their friend's grandparents and they so frequently pretend to go to their house that my girls just think it's a big game!






Monday, January 28, 2013

Nursing...a different kind

There was a brief moment in time that I thought I wanted to be a nurse. Specifically, I wanted to be a labor and delivery nurse. I was probably around 10 years old and after watching some show about babies being born, I thought to myself, "That is an amazing job, I want to do that!" For a number of reasons I was dissuaded from that and moved onto the profession I would eventually choose, teaching. I appreciated my years of experience teaching, they were challenging, but crucial in shaping a lot of ideas I have about myself, my kids, and others. I don't know if I would say I always enjoyed teaching, but there were a lot of times I did. I was a good teacher and worked hard to bring valuable and meaningful lessons into the classroom. I don't think I will return to the profession however. For me, the benefits and impact do not outweigh the commitment and heaviness that weighs on you at the end of each day. I am in awe of the men and women who do it, with and without children and how work tirelessly for the kids in their class.

I am so grateful for my time here at home, I love, repeat LOVE, being at home with my kids. I would not trade a single cheerio and elmo book filled day for anything in the world. I am so grateful to Matt for making this a possibility for me. I think being at home with my kids is a thousand times easier than being at work, maybe because this is where my heart is so it is easier to function with your heart closer to your physical presence. I yearned for days at home last year and have no regrets about the sacrifices we make for me to be here.

That being said, I'm not sure I want to stay at home forever. And there has been a nudging interest in nursing again. I am more than happy to be here while my kids are at home, but one day they will be in school. We think we will mainstream school the kids (definitely Mac and Keegan and hopefully Johnny too) which leaves me with a lot of potential time on my hands in a few short years. And one day, they will all be out of the house in some capacity or another. I realize that my time could be spent volunteering or keeping my house really clean or going to the gym for hours each day followed be leisurely lunches with friends. But like I said, that nudging interest in nursing keeps tickling the back of my brain...and my heart. I have had the benefit and honor this past year of being there with two friends as they delivered their children. It was the most amazing thing I have ever been a part of! I would even venture to say that it was more amazing than my own delivery experiences because my own have felt surreal...and a bit hazy from all those "forget childbirth" hormones that make it seem dreamy. And it wasn't just the actual birth that was so cool to me...supporting my dear friends, coaching them along, telling them how great they were doing, anticipating that moment with them, meeting their needs throughout the labor process was nourishing to my soul. I poured into my friends and felt completely rejuvenated and exhilarated by it. I walked away from both deliveries hyper and excited and so completely happy. And all I could think was, "People get paid for this?!?!!" So here I am, thinking about some sort of future profession and feeling this way about childbirth. I have been testing the waters, researching nursing programs, talking with friends who are nurses, and trying to decide if I have the guts to do it. I am so afraid of failure, of not being able to cut it. I am not very science minded, but if I have a goal in mind, I know I will work hard to plug away through that. I would have pre-reqs to take care of before I could even start a program, but that could be done while the kids are still mostly at home. Additionally, from what I understand, nursing is a great field because it can be flexible with scheduling, someone could work a completely normal schedule (8-5 Monday through Friday in an office) or something a little more variable (12 hour shifts ranging from 3 or 4 days a week to once a month). If I decided against L&D, there are a lot of different places I could go into with just a little transition.

A handful of people have asked, what about being a doula or a midwife, and I have considered that question, but honestly, I love the hospital. I love the idea of being apart of people practicing medicine. I like the way the hospital cleaner smells and the dry air in the hospital. I like the idea of working side by side with doctors and having a group of women (and possibly men) that you work a shift with. I loved several of my nurses at the hospital and the way they took care of me, I have had some really great experiences. And I like the idea that I have had three totally different labor and delivery experiences under my belt and that could be really beneficial in helping women make their decision. To understand how an epidural impacts delivery, to empower women to continue through without pain meds, and to know that sometimes deliveries get a little bit crazy, very, very quickly.

So maybe this is just a dream that will never come to fruition, but I am seriously considering it. It's not something that I can pursue now, so we will see where things go. The thought of it makes me happy though, so who knows where I will end up!

Sunday, January 27, 2013

Mac's Crush

So when Mac was a baby we would joke about her being in love with her little friend Henry. He would sometimes hold her hand or put his arm around her like little kids often do and she would look up at him with adoring eyes.We would also joke about her having a relationship with "Baby" Jonathan who is the son of one of her sitters that year and just a few weeks older than her. Because they are so close in age they would play next to each other on the floor and we have a handful of pictures of them making googly baby eyes and holding hands. In fact, we also have a picture of Baby Jonathan stealing a kiss from Mac at the fall festival when they were both a year old.

Those are kid crushes though...just kids being sweet to one another and baring no real meaning except for fun pictures to torment children with later in life!

But, kids grow up.

Recently, Mac has been talking a lot about a boy named Jackson in her class. She would smile shyly and look away as she talked about him, referencing how they would color next to each other and would get up to move seats next to one another in Church. She said they often play together and when prompted would tell us that "He has yellow hair, just like me and Rapunzel!" We thought it was funny and cute that she would go into such detail about another kid in class and because she was so shy about it, we wondered about this boy. Today, we asked her Church teacher about the boy and were surprised to hear that they hardly interact with one another at all. She seemed shocked that Mac even knew his name! Which makes me wonder, is she just latching onto a good story to tell us so we get off her back about what she does in class or does she have a little kid interest in this boy... Either way, it is hard to believe that our little girl is old enough to be talking about boys we don't know!!!


Saturday, January 26, 2013

Saturdays

I cannot reiterate how thankful I am that Mattie has Saturdays off now. Today we woke up when the baby did (8:00), laid around in bed until the girls started stirring (9:00), made blueberry muffins and scrambled eggs, ran some very not important errands, ate lunch on the patio of one of my favorite burger places, and came home to all take a nap. The times we have been able to do this since Mattie and I have been together (beginning in 2001) may not be able to be counted on one hand, but you could probably count them on my hands and feet. I am so grateful for Matt's new job for a number of reasons, but the new and normal schedule is much appreciated. Hopefully it is our first of many leisurely family Saturdays with little agenda, just focusing on spending time together as a family and enjoying each other's company.

Friday, January 25, 2013

T21 and the Holocaust

I used to do a lot in the realm of Holocaust education. Right before I entered my masters program I applied for and was accepted into the Warren Fellowship at the Holocaust Museum here in Houston. This was the beginning of an absolutely amazing and breathtaking journey. A journey that grew me both personally and professionally and uniquely shaped me as an educator and as a human being. I was honored with the opportunity to meet and adore survivors here in the Houston area. I engaged with and worked side by side with brilliant educators new and old. On their behalf I was sent to New York and to Israel to study and learn more. I became the teacher that students wanted to have for their Holocaust lesson. I drank in and learned as much as I could, good and evil. I spoke with passion and let myself be stirred with feelings and emotions for these people. As my family grew I was unable to do as much directly with the museum, but I continued to learn and to pass that along to others. I am so appreciative to the educators I worked with, the staff at HMH, the program at Yad Vashem, and the survivors who were willing to put themselves out there to pass on the knowledge they possess. It has meant the world to me.

I thank God that we were done teaching the Holocaust before we learned about Johnny's diagnosis. It was hard enough teaching the Holocaust as I grew a child in my belly knowing that there were pregnant women and children who were discarded as useless and of no worth. Learning about Johnny's diagnosis took on an entirely different level though. Within the Nazi party there was disdain for several different groups of "undesirables", including, but not limited to, people who were Jewish, Roma-Senti, Homosexual, Jehovah's Witness, Communists, and people who had special needs. In fact, people like Johnny were some of the earliest targets of the Nazi programs to create their ideal state. The Nazi regime developed the T-4 program, where persons with special needs who were in state programs and facilities were systematically chosen out and killed. According to the United States Holocaust Museum and Memorial website, at least 200,000 people with disabilities were killed during these times. Additionally, the measures used to carry out T-4 were utilized on a larger scale in developing the killing centers known today as death camps. Their families didn't know... More can be read about on their website.

I knew all of this for years proceeding Johnny's diagnosis. I had taught this over 20 times and had spoken with others about it dozens more. I had read articles, books, and seen videos about these atrocities. I had personal feelings of remorse and sadness for the actions that took place in the Holocaust. I had felt rage at those who acted in an unspeakable manner and at those who were so indifferent that they looked the other way as hell was created on earth. I had cried with survivors who I now consider my friends as they spoke of families and friends lost and undergoing trials that we will hopefully never know. But all those emotions have only been compounded and deepened with knowing about Johnny. For all the times my heart gets caught in my chest thinking about how wonderful he is and how much I love him, it doesn't compare to how tight my chest feels, how my throat closes in, and how the pain settles in my heart when I think about how others like him were treated at this time, to think about what his fate would have been. Because I cannot handle it, I have had to shut it off. Writing the simple post that I have has been trying enough as it is, I cannot go further into reading or studying beyond that. I have had to abandon learning about something that has been very important to me over the past 6 years. But I have to. It's too personal now, it cuts too deep and while we should take on these stories of such atrocities in a personal manner, to ensure that we refuse to let it happen again, it's too raw to take on in an educational manner. I still remember those lessons I have learned, but I have to just trust that they are deeply ingrained inside of me because I can't take in any more. Before they were deeply ingrained in my head with a human connection to my heart, now the lessons of the Holocaust are written all over my heart because of my son and the resemblance he bears to victims. Before, my heart wept for those lost. Now, my heart cries out in anguish for their murder and for their mothers and fathers and families. It's a sadness that I hope we will never know.

I hope that one day I will be able to resume some of my learning. I hope even more that these lessons resonate with others and that history will remain just that. I hope that Johnny's tenderness and sweet smile will teach others not to fear or hate people like him. I hope that Johnny and all of our kids never knows that hate.

Thursday, January 24, 2013

Raptor prayers continued

Now one of our huge prayers for people to pray for us is on going. We wanted prayers for our girls. Normally we have prayers of adjustment and feeling love from the parents as they are otherwise occupied and for the new baby that will become a part of the household. And we definitely wanted those prayers and they have been answered so far. The girls adore Johnny and I couldn't ask for two better sisters for him. Hearing MacKenzie and Keegan say Johnny makes my heart melt, they have even picked up on us calling him Baby Johnny or Johnny Boy and will use that term of endearment for him. They bring him toys and bottles, ask to say good morning to him, want to give him kisses, and sit patiently wanting to hold him in their arms. MacKenzie reaches over and strokes his face in the car seat as we are driving around and says, "Look Mommy, Johnny is holding my hand." She tells me if he is awake or sleeping and will proudly tell people who ask about her baby brother. Keegan wants to be as close to him as possible, tentatively touching his toes and his hand, cupping his wrinkly head in her chubby hand, and fawning over him with googly eyes and tender cries of "awwwwwww, baby, Dawn-ie". I could not have asked for an easier transition to three because they have come to love him and treasure him as we have. It's hard to remember time before him even though it's only been three months of him in our home.



We also prayed "for our family, friends, and friends' kids- that they will accept and include Raptor as just another one of the kids, with no disparate or preferential treatment." This is one that we will have to continue praying for all of Johnny's life. We know he will be picked on at some point, all kids are. We know he will be left out at some point, all kids are. We just pray for strength for him during those times and we pray for our kids and our friends kids to lead by example in taking care of Johnny and making him feel included and loved. This is a huge prayer we have had for MacKenzie and Keegan too. They are going to learn so much by having Johnny in their lives. We work hard to teach them all of these character traits like compassion for others, understanding diversity, standing up in defense, and they are going to exude it from their very core. We have often wondered if we have done the right thing in having our kids so close together. I knew growing up that I thought the age difference between my sister and I was not one I wanted for my kids. We love each other now, but growing up that four years felt like an eternity. I didn't know I wanted them this close however. I thought we would shoot for two to three years, but when Mac turned 6 months, Matt and I felt ready to expand our family. We thought it was crazy, but it was such a strong desire in our hearts. I never found our kids being close in age to be that difficult. We only waited a few additional months to try for Johnny because of school year timing and aren't entirely opposed to a fourth with similar spacing. I mention all of this because it seems nuts to have kids that close. It is definitely not the norm. We get looks at a lot of places for having three kids in the span of three years and one week. I know people walk away talking about us being out of our minds. But there is no doubt in my mind that it has been a blessing in this way with Johnny. My girls will grow up knowing Johnny as Johnny. They will never have an iota of a preconceived notion of what Down syndrome is. They have had no chance to be tainted by our society and it's conception of what is good and what is bad. All they know is the love they have for Johnny.




Additionally, we have a handful of friends who have already reported how God is working on their kids' hearts. One friend was praying with her boys for Johnny and his doctor appointments, her son was concerned about Johnny and asked if he was sick. She explained to him about Johnny having Down syndrome and took the opportunity for a teachable moment to tell him a bit about it. After showing him a few pictures of babies with Down syndrome on the internet, he exclaimed "Well they are just precious little babies!" How pure was his heart in not seeing anything wrong with these children. And how humbling is it that our kids can see beyond the diagnosis. Another friend has a daughter who has been incredibly indifferent to babies in the past who adores Johnny. She persists in asking to hold him and snuggle with him and has really taken to him in an unusual way. This is the impact that we want Johnny to have on people, for others to be drawn to him and to love him for who he is! I worry so much about Johnny not being asked to play or not being invited to other's parties or being left out of the group, but with kids like this in our life, I know he won't face that rejection as often.

We continue to pray for those who interact with Johnny to treat him as the boy he is. All of the therapy we seek for him is in hopes to get him and keep him on par with his little buddies so he can just be a kid, then a boy, and one day a man (that is weird to think about, my son becoming a man). We don't want anything else extra for him or anything else left out, just working towards normalcy.

Wednesday, January 23, 2013

Victories in Feeding

So no progress on actually nursing Johnny, but there have been some really good victories that I cannot help but feel really, really great about. I haven't even been attempting to nurse him because we are trying to work on building more of his oral muscle tone by having him use a pacifier and chewing on our finger. Our therapist suggested a gloved finger (oh, right, ok), but we have just been making sure our hands are clean before we go sticking it in his mouth. We are hoping that a little bit more of those "exercises" combined with him getting older and stronger will lead to some great success soon. And if not, pumping is going well.

In fact, pumping is going so well that I decided to drop my mid morning session. In my first session I get enough for 2.5 to 3 feeds so I figured I could stand to drop that mid morning session if it meant happier times for me and the kids by being able to get out, do some fun stuff, and not have to be at the house until after noon. It was the best feeding decision I have ever made. We have actually been able to have a normal for us schedule and I can feel the crazies leaving my head. I felt so trapped here at the house by being tied down to that session. It was making me crazy and I feel like the kids were starting to suffer because of it. When we are used to being out and about for hours at a time, being limited to a 2 hour window was interfering with a lot of our normal activities. Additionally, I knew I could pick up the session again if my supply suffered because of it. I was more than pleased to see that my body adjusted and has now doubled it's production for the next session meaning I haven't lost much milk in the process!

One of things I have been sad about not having with Johnny is that intimate contact that breastfeeding provides. Skin to skin contact is so important for their cognitive development and breastfeeding automatically builds a lot of that in. It is also important to have that time for milk production. The nurses in the NICU laughed at me when I told them I couldn't wait to get Johnny out from under the lights because I needed to smell him. They knew exactly what I meant though, we Mommies need that contact with our kids in order to increase all those hormones! I have also missed those long sweet strokes and kneading into your skin that babies do in response to long nursing sessions. Those tender touches that simply radiate with absolute bliss and love. I like to imagine them as being little "thank you mommy" signs since they can't utter it to you yet. In not having as much of that contact as a side effect of nursing, I have had to be more deliberate about taking time to snuggle him while he naps, mimicking a nursing position as much as possible while he takes a bottle, and cuddling him close when I can. I think he instinctively craves that time too. When I let him sleep on my chest he will fuss and move until he is touching my skin whether it be on my chest or wedged tight under my chin. In fact, if I am wearing a t-shirt or something without much chest "showing" he will pull at it to get some skin close to his cheek. I love that he wants to be so close to me. And in turn for not being able to knead into me, he gives me the gift of holding my hands as I feed him a bottle. He strokes my fingers and laces his through mine as he drinks his milk. It makes my heart feel good to have that loving action given to me. That little boy sure does make my heart pitter patter!



I have been wavering back and forth on contacting the milk bank about donation. I want to donate again, I love to donate our extra milk and help out teeny tines, but I am worried because of the fact that I have to exclusively pump. The Milk Bank has to commit to a lot when they accept a new donor and I don't want them to have to pay for my testing and it not be worth their time and money if I have to stop donating in order to use up my stash for Johnny. You can imagine my delight when a friend contacted me about a sweet Baby Boy she knew who was in the NICU here in town. His Mommy is pumping desperately for him, but they were in need of donor milk. My friend immediately thought of me and asked if I would be willing to donate a bit to help out. I jumped at the chance to help someone out without a long term commitment (since hopefully his Mommy will be able to take over and hopefully he will be able to nurse before long). All I needed to know was how much they needed! Because they are unsure of how much he will take and when Mommy can take over, I approximated two days worth and sent it with my friend. We found it ironic that I kept my milk cold with the ice packs given to you by the formula companies in the hospital. I felt so validated in being able to help someone out with nourishing their child since I feel I need to wait to contact about further donation. It was definitely one of those rewarding circumstances when you help others!!!


I hope to have more news on actually nursing Johnny soon, but I am happy with where we are now. Would I love for him to be nursing? Of course. But if this is how it has to be, then I am thankful for this situation too!

Tuesday, January 22, 2013

Doctor update

The multitude of doctor appointments has finally dissipated. While we still have doctor appointments to look forward to, the constant state of in and out of office visits has slowed to a trickle. We don't have it all figured out yet, but we have had some pretty good information sent our way. So after months of having nothing but "wait and see", we are getting a few pieces to the puzzle. 

Cardiology is pleased with Johnny. He is gaining weight, he is responsive, and he is not lethargic. His x-rays looked good with lungs looking relatively equal. The cardiologist could hear the holes in his heart better which he says is a great sign because as they get smaller, they sound more and more like a whistling sound. Our cardiologist takes all this information together and says let's leave him alone for awhile. There isn't any point in messing with something that could fix itself so we will go back in the spring for an echo. This is all fantastic news. In July we thought we would be scheduling surgery at this point!

Johnny's Occupational therapy has brought positive news as well. Today was Johnny's second meeting with his therapist and he is developing normally thus far. He has lowish muscle tone, but he is still strong and fights hard to keep his head up. She was really impressed with his abilities and how much he is already achieving. She was also really impressed with how vocal he can be, making sounds and observing the world around him. I have some great tips on things to work with him on and am happy we have extra people watching out for our boy.

A huge fog has been lifted today as Johnny went to the audiologist. I cannot tell you how big of a relief it was to glimpse over at the computer screen and see "PASS" written as they tested his left ear. I could have cried then and there...I felt immensely blessed with hearing in one ear. Then the audiologist tested the right ear which also got a big ole "PASS". It was such a relief to know that he has hearing and as far as they can tell will not have that issue to deal with. We will have to go back in 6 weeks to look at his ears again because he has some congestion and fluid build up around his right ear drum and they don't want that to be a problem, but for now everything looks great.



I am so proud of the trooper this little guy has been throughout it all. I can't tell you how many scales he has peed on and how many arms he has cried in, but it has been worth it to see that his every need is taken care of.

Monday, January 21, 2013

The Net

I try to imagine what my response may have been if I had a friend who found out the sweet little baby they were expecting had Down syndrome. I had never really thought about it before. I know my response would not have been adequate. It's so hard to know what to say. "It's ok" is completely insufficient, "Oh" seems so abrupt, "I'm sorry" can spur all sorts of unwanted feelings...maybe "We love you" although that doesn't really address the matter at hand. I know I have failed at being there for friends in crisis. I know that I have been terribly at loss for what to say when friends have lost their sweet babies. I have learned how much a meal delivery and a hug can mean. I know how much a "We love this baby and will be there for them no matter what" can strengthen a Mommy who is so numb that she isn't sure her heart is stirring for her child. I know the constant promise of prayer can nourish when Mommies and Daddies have no clue what to pray and stumble upon the simple beginning of prayer, "God, we know...we ask...we...". I think I put on a pretty brave face through it all, life continued, but I often drew on others reaching out to us to get me past the times that I wasn't brave, but scared and lost. After initial stings from others who don't exactly know the right thing to say, you can start to accept that at least people are trying and are coming from a good place. You realize that people aren't being malicious, they just don't know.

There were so many, women in particular, who carried me through my pregnancy and who continue to carry me today. Women who asked again and again how the pregnancy was going, who held my belly trying to feel kicks, who confirmed which hospital we would be at and arranged sitters to come see us. Women who prayed for a little boy and had outfits ready to go for our little nugget so he wouldn't ever face the prospect of wearing pink! Women who begged for pictures of Johnny, who commented on how cute or handsome he was, who fawned over his tiny "babiness." Women who fight over holding Johnny at church, who pass him from pew to pew to get their snuggles in with our sweet boy, who seek us out and say "Let me see that boy". Women who gush over him and laugh at his little expressions, at the raising of his eyebrows, at his stubborn unwillingness to finish his bottle. Women who come over to my house or arrange play dates or girl time just so they can hold Johnny. Women who get mad if I show up to an event without him and are visibly upset that he isn't crashing the party. Women who anticipate with me who Johnny may be, what he might accomplish, and what we will all teach the world. Women who simply whisper into his ear "I just love you" and kiss his head relishing in his sweet baby smell.

I don't know how they do it. If I was in their position, I think I would be so scared. I would be so hesitant. I would be torn between wanting to love and support my friend and sad for their future. I would worry that they would see that on my face, that they would see my concern through their tear soaked eyes and that because of it they may falter. I have never had that. I have seen my friends sad for us, I have seen tears springing to their eyes, I have seen them fighting them back, but I have never once felt their doubt, I haven't felt their despair. They texted messages, sent emails, made phone calls, and burst into the hospital room and our home with utter joy. I rarely had the chance to feel my own concern, my own anguish, my own thoughts of rejection because they were 5 steps ahead of me in a place of joy and happiness and anticipation. I don't know if they were naturally there or if they forced themselves to be there, but I soaked it all in because I needed it. Their hearts were filled with love for me, for Johnny, for our family and through seeing their hearts, I was able to recognize the place burrowed deep inside where Johnny had permanently attached himself to me. Because of the love they were able to show for him without hesitation or abandon, I was able to take the adoration, love, and pride in my son that I felt instinctively and show it socially.

When you see how much others love your children, two things happen. First, you feel love for your children even deeper than before. And second, you feel yourself bonded to the person, that at that moment you would do anything for them, and you can't help but love them in return. Thank you ladies for being my net.

Sunday, January 20, 2013

Mac the Chef

Mac really loves to help us cook which makes my heart happy. I enjoy letting her stir and pour to help me make food for our family. She takes a lot of pride in cooking too. We have noticed however that her palette may be a little more...exotic than ours. We love that she eats raw spinach, feta cheese, and tons of other foods, both  normal and "grown up." We are concerned when she starts making her own combinations though... Today she told us she was making strawberry soup with veggies in it...and has been known to dip her fruit in ranch dressing or honey mustard. She also likes to rebuild her sandwiches and make them into what she calls "boats". She is a funny little gal and we love her creativity...you just might want to ask who made your plate if you come over for dinner. 


A pretzel and apple sandwich


The dreaded kid ice cream combo-
Bubble gum ice cream with gummy bears!


 The worst yet-
Ice cream, tater tots, and ketchup!!!

Saturday, January 19, 2013

The Zoo

My dear friend Crystal took the kids and I to the zoo this week. While the weather was a little cold (high 40s, low 50s), we had run of the place as there were very few people there. It was great to let the kids stretch out their legs a bit, especially as we had been cooped up a bit due to cold and rainy weather. We weren't daunted by the cold weather and were hoping some of the animals would be more apt to playing in the cold rather than the usual hot and muggy weather we Houstonians are so fond of. So, we bundled up the kids in jackets and hats, armed ourselves with sippy cups and snacks, and hoped for a good little adventure. While some of the animals were kept indoors due to the cold (which my mom pointed out as being ironic because we had our little Monkeys out in the cold), it was still well worth the trip because we could see and linger at all the animals we could find because of the lack of a crowd. I had never been to the Kid's portion of the zoo and was impressed with the extra stuff they have added there. The kids really enjoyed the porcupine, bald eagle, otters, and the raccoon. In fact, there was a trainer in with the raccoon prompting her to do tricks for the kids. 

They had goats in the petting zoo area and the girls warmed up quickly to them.



We laughed at the Cougars who were frantically panting the fence line as the kids played with glee in the leaves nearby. How tempting to have such delicious morsels so close, but out of reach!

MacKenzie said she really enjoyed the elephants and the sea lions. She was very concerned that the baby elephant was walking away from it's mama. Keegan said she really liked the giraffes and the elephants. It was cute to watch them look at the meerkats who were ready to look at and play with kids on the other side of the glass. I love otters and could have stayed to watch them for quite some time. Johnny was utterly unimpressed and slept in the faux-by wrap for the whole trip.



Hopefully we will have many more days of the zoo ahead of us!!!

Friday, January 18, 2013

Mattie is working HARD

A quick pause from the prayer responses for an aside about Mattie's hard work

A couple years ago, Matt interviewed for a position with a company downtown that our friend Ryan works for. While the position didn't work out, Matt apparently made quite an impression on the big bosses. The big guys would occasionally ask Ryan how "Babyface" was doing in reference to Matt. This fall, a position opened up and they immediately asked Ryan to get in touch with "Babyface" because they wanted him for the job. Matt getting this job means so many great things for our family. Not only is it a significant pay increase, but already this job makes Matt happy. He is able to continue finding out what his clients needs are, putting together what best meets those needs, and checking in on them to make sure they are still happy which is what he loves (and is really, really good at), but he is also fairly compensated for it (which wasn't really happening at the bank). As soon as the job was offered to Matt, you could see the stress leaving him. I think he also likes having what I call a "big boy" job that he drives downtown for and makes him available to meet up with friends for lunch. Another great benefit is the flexible nature of his position that means he can go into work fairly early and get home before the girls are up from nap. At the bank, although he worked 15-20 minutes away, he wouldn't get home until 7 making our evenings short.

This job does mean some traveling, but for all the benefits it brings our family, I cannot get frustrated at that. He has quite a bit of travel this first year, usually spanning a week at a time. I can't help but think that there are families out there who are compensated much less for a lot more travel. Or to think about our military families (like Matt's sister) who have to be separated from their loved ones for 6 months at a time. So while we do miss him on his trips, we are glad for what it offers us.

Mattie is also halfway done with his MBA and will be plowing through to finish up next December. He had a really tough semester in the fall so we are hoping that things are a bit more manageable from here on out. Again, it is hard to have him gone for two nights a week and to have him studying a lot in the evenings, but we know this is just for a season and it will be beneficial in the long run. I find it amusing that Mattie needs time to study because he would torment me in our undergrad as I worked through pages of notes and read numerous books and articles to make it through my History degree (as compared to the zero homework in his AgDevo)...my how the tide has turned!

We are so proud of our Daddy and all the hard work he does!


Thursday, January 17, 2013

Raptor prayers- part 3

Prayers for Matt and I to enjoy the delivery experience, that we have clarity to take everything in, and that our joy is a witness to all who encounter us.

This was a funny prayer seeing as we had a lot of time to prepare for it since I was in the hospital since the day prior. We pretty much knew we wouldn't be able to leave without having Johnny and Dr. Norton was pretty booked up the morning of the 31st with surgeries so we really had time to relax and settle into the fact that we were about to have our third child. Everything was pretty clear until the last 15 minutes or so...at least for me. I think it is so odd that your mind really blanks entire chunks of time out. I feel like my eyes were closed for most of that time, but if I focus really hard, I can sometimes catch small snippets of what happened in my mind. I drive Matt crazy asking him about all sorts of details of the delivery, but it's because I remember some things and can't remember parts that surround it. I suppose that is part of the whole "your mind making you forget so you have more". 

I think we were a good example to others, that people got to feel our joy. We never shied away from telling the nurses about our diagnosis and smiled and laughed almost the whole time. 



 As you can see in the picture above, I did cry...no bawled...during delivery. With things happening so fast and finally having Johnny here, I had no other choice than this absolute release of emotions. I could not stop crying, except long enough to ask how he was. I made sure to reassure everyone that it was a happy cry though.


I was pleasantly happy with the nursing staff in the hospital mimicking our joy and happiness. I wasn't sure if they were sincere or if they were being good about making an extra fuss over Johnny to make us feel better, but we had a lot of extra positive attention from the staff. The nurses oohed and awed over Johnny, asked for extra time to hold him and love on him, and laughed with us over his cute little expressions and mannerisms. If they were trying to help us feel extra joy over his birth then it worked and we hope that happiness radiated throughout the room as people came to visit.



As we work through showing people that we truly are happy, I have to watch myself that my pride doesn't take over too much. Sometimes I almost feel defiant as I tell people that my son has Down syndrome, like I am challenging them. I need to let my guard down because overall our experience with others has been positive and will only be more so when people see how blessed we feel.

Wednesday, January 16, 2013

Raptor prayers- Part 2

The next prayer we had for Johnny were

Prayers especially for those helping us in delivery...

I hope this prayer helped out Matt, my mom, and my sister. All three of them got a big dose of "Ashley's transition" and had to witness things a little out of control. I still firmly believe that part of the reason things got so heated was due to a lack of understanding on my nurse's part (not my friend nurse, the other hospital assigned nurse) and because my mind was told that I wasn't experiencing what my body was actually going through, then things got wacky. All three of them were great though and it would have been funny to watch as I grilled them for answers to questions they couldn't have possibly helped me with. Among them was, "What is taking the anesthesiologist so long?" which was relatively easy to field, but more difficult were questions like, "Is she being serious?" (in relation to the nurse telling me I have three more hours to go, 15 minutes before Johnny was born) and "Where did you go?" (to my mom who I hoped was getting my doctor in the room herself). I know it was immensely hard on them to see me feeling the struggle of delivery and feeling in their hearts that we were probably a lot closer to delivery than we were being told and not having much they could do about it. I needed the three of them there, helping me laugh when I could, and trying to keep me calm as things approached the end. And super blessings to Matt for getting a full workout as he kneaded the small of my back to help me through each contraction.



I am so grateful for how our delivery experience ended up. The "plan" was for my doctor to delivery me, for there to be a neonatologist present, and for an extra baby nurse to be present. In the end, there were no doctors present and my nurses delivered Johnny with tremendous ease. Other than there being no doctor in the room, the delivery was textbook. There were no complications, no cord issues, hardly any pushing needed, and Johnny looked absolutely perfect when he came out. This blessing of help came on my nurses who came in at the right moment. While the plan was for Dr. Norton to deliver me, I am so glad that Nurse Charissa was there to bring Johnny into this world. It was second best timing and second best case scenario for me. And because Johnny had no issues at birth, we were able to take some time with him and enjoy him before getting the once over in the NICU. One thing I have struggled with is how to feel about our other nurse and how misguided I felt by her information. I am going to need to mull over that more. In regards to prayers however, I hope that my L&D experience was good for her and pray that she gleaned knowledge and experience within that time.


When thinking about this post, I thought to myself, "How is this going to reflect on prayer...so much went unanswered...", but my prayer was general enough that it wasn't unanswered at all. I asked simply for prayers for help and failed to pray for specifics that I wanted in my heart. I was so worried as I began writing a series on answered prayers, how it would be to list all the things I didn't get out of my L&D. I smiled as I read the only thing I wrote...prayers for those helping us. It left so much up in the air, but maybe it's because I trusted that God was fully sovereign over this time. I had very detailed wants for my labor and delivery experience, I had very detailed prayers for other aspects of Johnny's life, but this is a very general request. And I wanted so much for his labor and delivery. I consulted with Dr. Norton ahead of time and we discussed (with her approval) to have minimal monitoring, a hep lock instead of a constant i.v., avoiding pitocin, and being able to move around the room and the floor among other things. Instead I had constant monitoring for 24 hours including internal monitoring, an i.v. for 24 hours to push fluids to Johnny, on and off pitocin as he would allow to induce delivery, and was unable to get up because of all the complications leading up to his delivery and needing oxygen for large portions of the day. Would praying for the "ideal" birth have made it more likely to be so? Probably not. Sometimes prayers are left unanswered and sometimes prayers are fulfilled differently than we think they are. So I would hate to think less of God when our prayers were left unanswered or unfulfilled because that shouts arrogance.  And after the weeks of waiting over Johnny's diagnosis and not knowing what to pray for, knowing what my heart wanted, but being afraid to deny the child inside me, I had to make my prayers general. In the context of L&D, I was so worried to pray for things being a specific way and having them end up worse. Gratefully, I prayed for general and got a pretty good situation.  Ultimately, I think I prayed for the exact correct thing, "Prayers especially for those helping us...". The end result was what was important...a healthy baby and Mommy. And it could have been worse...there was a baby that came out in a much worse situation than Johnny just that morning, we could have been facing a cord issue, we could have had my mom and Matt deliver Johnny if the nurses hadn't come in when they did, and as I reflected on yesterday, Johnny could have been seriously hurt if we hadn't been monitored so closely before hand. 



So while I cannot exactly reflect on how "those helping us" felt and if they were bolstered by prayer support,  I felt thankful for having them in the room.

Tuesday, January 15, 2013

Raptor prayers Part 1

A few dear friends hosted a shower for Baby Raptor a few weeks before he was born. As part of our showers in our church group we usually have some sort of prayer time. My prayer requests were a little detailed because of the nature of the knowledge we had about Johnny before he was born. I have been reflecting on these prayers and how they have been answered in different ways. I will try to address these reflections over the coming days.

One of our first prayers was- Praise that Raptor is growing great and not showing any signs of complications thus far, prayers that this report continues. Praise and prayers for the medical team we have in place, praise for their concern, support, and knowledge. Prayers for good decisions and clear communication in our appointments and delivery to come.

What a well timed prayer! We were so blessed that, throughout our pregnancy, Johnny showed no signs of complications and growth issues. In fact, as I stated before, Johnny had very few indicators of T21 after his initial diagnosis. With kids with Down syndrome, they have to be on the lookout for major growth issues, heart problems, and other intestinal issues as well. Additionally, there can be major placental failure late in the pregnancy which leads to a high occurrence of these babies passing away in the womb. We were fortunate to have such diligence in our doctors working together to keep an eye on my body and Johnny to make sure he was ok. 




This prayer was answered fully when I went into the MFS the Tuesday before Johnny was born. As I wrote in his birth story, I had been feeling out of sorts, but nothing serious enough to warrant a call into the doctor. Thankfully, this visit was well timed to show that the good health we had experienced so far had run it's course and it was time to intervene. Dr. TamTam stayed calm and checked and rechecked to make sure each measurement was as precise as possible. He looked as closely as he could at the baby, watching each breathe, watching the heart beat, making sure it was as consistent as it needed to be. He worked together with Dr. Norton to make the call to admit me to make sure we would not end up with a more precarious situation on our hands. I am so thankful for God's hand of protection over Johnny at this time, for as quickly as either my fluid was leaking or wasn't regenerating, we could have faced a very dangerous experience within a matter of a day or two. The whole experience in making the decision to admit me to the hospital and make sure Raptor was ok was absolutely seamless and absolutely the right call. I really think God prepared my heart for this too because I remember having a feeling that morning that we were going to have to make a decision like this and that I would be spending the night in the hospital. Each and every decision was so clear. The doctor's tried to made a conservative call in admitting me for fluids and monitoring rather than jumping to immediate induction or emergency c-section. The ultrasound tech the morning he was born got clear pictures that clearly stated this problem wasn't going away (as the fluid levels had dropped despite being on constant i.v. fluids). And when it was time to induce me, I had already begun dilating more on my own, so my body was in the best possible state for an induction. 





Sometimes God works through ways that we don't understand and other times, like in the case of our labor and delivery, he works within the knowledge of our medical community. He puts you in the right places at the right time with the right people watching over you and ensures that you will be taken care of. We are immensely thankful for our doctors and their abilities to compassionately take care of us, we couldn't have asked for a better situation in this regard.