Wednesday, September 12, 2012

Not a good sign..

Please put your prayers for a healed heart into over drive!
We just got back from her 6 month well visit and the pediatrician said that she could still hear a really loud murmur and that her liver seems lower that she remembered it being, which is a sign of heart failure. We will find out next Wednesday Sept 19 if she indeed does need surgery soon or if we can wait.... PLEASE PRAY THAT WE CAN WAIT!
She also put her on some reflux medication, so we hope that will help her eat more.

Tuesday, September 4, 2012

Update

27 Weeks, 1 Day

I am sorry I have not updated in so long. I see that many of you have been checking regularly and I REALLY appreciate that! We have been pretty busy here. We are currently seeing 5 therapists and it is exhausting. I think it is a combination of their level of optimism, how she is actually doing and my ability to understand what they are saying, but I feel like they are all saying different things at times.

Today with had PT with her two therapists. One said she is on track then other said she is not doing things that a typically developing child he age should be doing. One told me how to help teach her to roll over one way, cautioning me not do it another way and then the other one told me the opposite.

Many people have asked why I don't just stop seeing some of them, but I really couldn't decide who not to see. I think they are all bringing something different and something useful. I just need to use my knowledge of Adaline to decide who I am going to agree with.

Adaline was gaining and loosing weight to stay right around 10lb for over a month. We started her on solids and added some formula powder to them and she has been doing well. I even called the nutritionist today to ask if adding so much powder was OK and she said it was... so onward we go!

I am sorry I don't have more to write, but I am mentally exhausted right now and don't really want to write more.

I should add that Adaline continues to be a huge blessing in our lives. I love this little girl to pieces.

At the lake on Labor Day

Wednesday, August 15, 2012

She Would Be Dead.....

24 Weeks, 2 Days

Tonight I was scrolling through my facebook news feed and the director of Reeces Rainbow posted a story of redemption. I was struck by how thin this little girls legs are and I called my husband over to see them. He said "Can you imagine if Adaline was there? If these kids who eat well look like this then....." I finished his sentence with "...she would be dead, she would be dead". With those words, I feel like someone kicked me in the chest. It is overwhelming to even think about how many kids are starving and dying right now, alone and without moms and dads.
PLEASE visit the Reeces Rainbow website and pick out a waiting child to pray and advocate for. You don't have to adopt to make a difference.

Thursday, August 9, 2012

Please Don't Waste My Time

23 Weeks, 1 Day

My love affair with the new OT office took a significant blow this morning...
My husband took time off of work to go in with us and when we got there we found that we had been scheduled with a different OT than the last time we were there. So, basically we just did a repeat of last week. I REALLY hate it when my time is wasted.

To add insult to injury, we have been on a waiting list for our first choice of private OT office and when they didn't have any openings when Early On stopped, I signed up with our current office. Then last week, literally HOURS after out initial OT appointment, our first choice called and said they had an opening. Argh...

Speaking of wasted time, here is Adaline drinking her last bottle of fresh breast milk. (No she does not have a weird rash, it is just a shadow). About a month ago, I started pumping only 4 times per day. Spending about 3 hours pumping per day was taking too much time away from the kids and I needed to find a balance. I had planned to keep pumping until she was 6 months old, but my supply kept going down. A couple of days ago, after 9 hours between pumping, I only made 40ml (just over an ounce) and I decided that the time had come. I was still spending well over an hour a day pumping and it just wasn't worth the reward of 4 oz.
I still have quite a bit of milk in the freezer from when I Adaline was in the hospital and the week that I did a trial on just formula to see how she would do, so she should be able to get a bottle a day for at least the next month. I KNOW that there are benefits to breast milk (trust me, the breastfeeding nazis remind me all the time), but this was the right decision for me and my family. I am already loving the extra time I am getting with my kiddos and I think big brother especially is enjoying it as well.

Sunday, August 5, 2012

Electrocution

22 Weeks, 6 Days

My kids have crazy hair. My son had more hair to begin with and could be styled out of the tub. Adaline's has a mind of it's own. I keep thinking that maybe once it gets a bit longer, it will stay down, but she will be 6 months at the end of the month and it is just getting taller....

When my son was a baby we styled his hair and took a picture of him next to the light socket.
It is one of our favorite pictures of him, so we decided to take one of Adaline too. We had trouble getting a clear picture though.





Thursday, August 2, 2012

Loss

The Down Syndrome community has suffered a loss today.

Please take a minute to write in his guestbook at: http://www.meaningfulfunerals.net/fh/obituaries/obituary.cfm?o_id=1549049&fh_id=10184

Thanks!

I love you....

22 Weeks, 3 Days

...... is what slipped out of my mouth after Adalines OT appointment when the OT asked if I had anything else... It was a bit awkward, but I think she understood why I said it.

I have been begging for months for help on Adaline's feeding. Some people seemed sympathetic, but didn't have any solutions to offer. Then there was the feeding tube suggestion, but I knew there had to be something less invasive that we could do. Others said she couldn't eat due to low tone, or low O2 from her heart condition, because she has reflux or because she doesn't empty her bowels often, but none of those seemed to make sense to me for Adaline. I asked a few professionals about speech therapy or may be private OT therapy, but they dismissed it as unhelpful. I wish I would have pushed harder.....

The OT immediately noticed why Adaline only eats when she sleeps and why things have seemed to be getting worse with her.... Most babies suck about 10 times, then breath. Adaline sucks about 20 times, then freaks out because she isn't getting air and latches off. This is also why she leaks, it has nothing to do with her tone or strength, she is just trying to breathe while she eats. The solution isn't easy, but we can re-train her to eat well and work on gaining her trust that we are not trying to drown or suffocate her. I am so grateful that she still gives me smiles and seems to still love me after months of waterboarding her multiple times per day!

Praise God for answers and non-invasive solutions!

Tuesday, July 31, 2012

First Solids Success

22 Weeks, 1 Day

I totally forgot to post these pictures! On Sunday we had our first solids success! We tried a couple of other times with avocado, but she didn't seem to care for it. This time we tried some prunes, she wasn't sure what to do with it at first, but after the first few bites she got the hang of it and ate half of a tub of them. She probably would have had more, but I thought that it was probably enough for a first feeding!

Why so serious?
 She was such a mess I put her straight in the tub!

She must have really like them because I caught her trying to steal some salad at dinner the next night..


Monday, July 30, 2012

First Private PT Session

22 Weeks

So, since the free PT and OT doesn't run in the summer (and no one told me until it was too late to schedule other PT at the favored place), we had an evaluation for the hospitals PT. I was told that I probably wouldn't like it because it is very medical. It is also on the other side of town and I have to go to them, so I was not excited about going.
Also, they charge $100 per 15 minutes of therapy and the best answer I could get on if insurance will cover it or not was "probably", so it makes me a bit nervous.

I REALLY liked it though. The therapist who has the same name as I do, did a really good job of explaining things to me. I finally have an idea of where Adaline is compared to "typically" developing children. She said that Adaline is not what she would expect from a child with down syndrome. Her tone is good. She said that we could be a bit more aggressive with her therapy in the next few weeks to try and get her ahead, but that she really didn't see anything alarming. She said there are some things she would like to see her doing at this age that she is not (reaching for toys) but she isn't that far behind a "typically" developing child.

When I told her about our feeding routine (about 1 hour before eating time, I get her to play so she is tired, then put her in her bouncer to fall asleep, then feed her for an hour), she was a bit alarmed. She had an OT (who also has the same name) come in and she said that they want to do a full evaluation for OT because there are things they can do to help her eat better...... YAYAYAYAYAAAAA..... I have been asking about this for 5 months now and I have been told they didn't have any other ideas....... I am SO happy someone thinks they can help with this!

Thursday, July 26, 2012

Not Mother of the Year

21 Weeks, 3 Days

So, I failed big time as a mom last week. Adaline, my son and I ran some errands and then went to the park. While at the park, I made sure Adaline was in the shade while her brother played. This required multiple moves of our stuff as the sun changed locations. However, between the (short) walks into the stores and to the shade at the park, I was not so careful. Adaline got a HORRIBLE sunburn. I have since applied snaps to her car seat and snaps to a blanket so that I can snap a sunshade on her carseat without worrying about it falling off, but needless to say, the damage is done... :(

In other news:


We got out the excersaucer. I put it together without the springs to make it a bit lower since her legs are pretty short and she can still only touch on her tippy toes. She seems to really enjoy being able to be upright and look around. She does get tired out after awhile, but I think it is a good work out for her and it helps her fall asleep easier when it is time to eat. For those of you that don't know, she rarely eats when she is awake... weird I know.

The excitement ended shortly after this picture was taken though. Brother pulled one of the toys back and catapulted it into her face by accident. 

In other news, my daughter is a ham. She recently discovered that when she is in her vibrating seat that her voice will vibrate when she talks.... 


Monday, July 23, 2012

Facebook Page

I have created a facebook page at http://www.facebook.com/AdalinesHeart where I will post heart related updates. Please "Like" our page and pass it along to your friends. I would love it if as many people as possible would pray for her!

Thursday, July 19, 2012

Please put your prayers for healing in overdrive!

20 Weeks, 3 Days

Adaline had her cardiologist appointment today.

We met a nice Amish family in the waiting room. I have always been fascinated by the Amish, so I tried my best to not come across too creepy.  She had her daughter at a birth center and a few days after she got home her daughter turned blue. They took her to Bronson and next day they found that she had a heart defect and she went straight to Ann Arbor for surgery.

They did not take any ultrasounds of Adaline's heart this time, but said she is doing well. They are happy with her weight as well.

Here is where I am desperately seeking prayer for healing. If Adaline's VSD and PDA are not healed at the next appointment, we will schedule surgery for around November. However, if they ARE healed, she might be able to go off of her meds and wait YEARS for her surgery....please ask your friends and family to pray for my princess! 

Wednesday, July 18, 2012

Haunted

A child lies on orphanage floor next to a drawing he made of his mother in an attempt to console himself.

This doesn't really have anything to do with Adaline or Down Syndrome, but saw this picture a few hours ago from the convicting piece that Minivans and Mom Jeans posted and I just have to repost it. It is haunting me.

I think about that little boy being Adaline's brother who took an hour to fall asleep tonight and screamed for me to come rock him while I was out feeding Adaline. I am right here, 10 feet away from him and his heart is breaking for me. I cannot imagine the pain the little boy in this picture is feeling.

Sunday, July 15, 2012

Supported Sitter

19 Weeks, 6 Days

Adaline has been on a hunger strike again. Her immunizations really did a number on her. She had fevers of 102 after taking Tylenol and her tummy just has not seemed right since then. She is not eating much and when she does eat she will only eat a bit at a time.

She has had a lot of firsts this week. Today I gave her some apple juice to try and move things along and she loved it.

Grandma and Grandpa brought ice cream cones over tonight and Adaline sat in her brothers swing while we ate.

 She has been sitting up very well, so tonight I tried her on her own with the boppy to catch her. She did well. She just needs a finger to hang on to to keep her balance and she can sit for a few seconds.

 She can sit by her self with her arms supporting her, but her arms are shorter than average and her torso is longer than average so it almost looks like she is on her tummy. (look at those BLUE eyes!)
  
She is such a lucky girl to have such a good big brother! He is encouraging her during tummy time in this picture. 
 

Wednesday, July 11, 2012

4 Month Check up

19 Weeks, 2 Days

Adaline had her 4 month check-up today. She got good reports all around!
She is actually in the 25th percentile for height on the typically developing child chart without adjusting for being premature. The doctor is also happy with her weight. She was 9lb 9oz.

Adaline was a huge show off too. The whole time the doctor was asking questions about how she has been doing, Adaline was sitting up straight and supporting her head and trunk very well. While the doctor was checking to see how she did on her tummy, she rolled over twice. I am so proud of my little girl.

She does however need some prayer. As with the last time she had immunizations, she has a pretty high fever and is pretty fussy. She has also not been very hungry the last couple of days.

Saturday, June 23, 2012

Breaking news!

16 Weeks 5 Days

This just in from the living room, Adaline rolled over from her tummy to her back!

I of course missed this event because I am in the other room hooked up to the milking machine.... argh.

Update:
I got time #5 on video! Please ignore the pump in the background.... and my obnoxious nicknames for her.

Tuesday, June 19, 2012

A Visit From Our Favorite Nurse

16 Weeks 1 Day


I posted this on facebook a few days ago, but I wanted to post it here as well as this is an important part of Adaline's life!


This is why I almost cried each time there was a shift change at the hospital when Adaline was there. Her nurses were so good to her and genuinely cared about her. It is such a contrast from the experience a family had abroad with their newly adopted child that I had read about:
"I experienced first hand the disgusted look the EMS people gave my little girl. The way they left her barely clothed on the bed. The way they spoke the words: "Down Syndrome'', spitting them out with anger and repeating over and over. We were unfit parents and she should have remained in her institution. Five hospitals refused her medical care. My facilitator held her hand out for 200 hrivna bills more times than I can count at the hospital that finally admitted her. That money was paid to the doctor, to the nurses, as "incentive money". One nurse was especially horrible to Kori and caused her pain on purpose. My facilitator met her in the hallway and handed her a 200 hrivna bill in exchange for humane treatment for my daughter. " - You can read more here and see before and after pictures of their daughter -http://covenantbuilders.blogspot.com/2012/01/koris-story.html

The person that is holding Adaline was one of her nurses while she was in the hospital with RSV. She has kept in touch with us to see how she is doing and she came to visit today. She also made Adaline a blanket for her to snuggle while she was in the hospital.

Sunday, June 17, 2012

Stop Killing my Daughters Friends!!

16 Weeks

Horrible picture of me!
On Saturday, Adaline, my son and I did our first LifeWalk. It supports a local organization that does a lot of what Planned Parenthood does minus abortions. I have always been very pro-life, but after being in a situation where it is "more ok" to abort in some peoples opinion, fuel has been added to my fire. It was a HOT day, but I wanted to get out there to show everyone how cute my daughter is, to tell our story and to get the word out about Reeces Rainbow.

The other day I had asked Adalines therapists how many other kids in their 0-3 program they have. I expected to hear a number like "50", but the answer was "5".... 5??? Adaline is the youngest in the program by a half a year.

The statistic that 9 in 10 prenatally diagnosed children with DS are aborted has always upset me. It saddens me that these precious lives are never lived, but it was one of those things that didn't directly affect me.  However, at the walk it hit me that these children would be my daughters friends... they would be the ones that "get" her, that she can relate the most to. These are friends that my daughter will never know because they are being killed. It makes me SO mad. She will have to go through life with a fraction of the support and companionship that she could have had.


Monday, June 11, 2012

A Good Week for Development

15 Weeks

Adaline has gone quite awhile without doing anything new and exciting. My son did/does exactly the same thing, so I know I shouldn't worry, but sometimes I wonder if she will just be a baby forever.

However, just like my son, when it rains it pours!

First, in church on Sunday she held her head up with perfect posture for about 4 minutes during a song. She may have done it for longer, but I was worried about her and had her rest against me.

Then, today I caught her doing this:
She has kicked the rattles before, but she seems to be looking at them now and looks like she actually intends to kick them.

I am still waiting for my smile and keep thinking she might be doing it, but sometimes she lets out gas or something right after. I am waiting for that smile that gets brighter when you smile back and that hasn't happened yet.

I have also started making ribbon flowers for my other blog http://anextrasomethingspecial.blogspot.com/.



Thursday, June 7, 2012

Cardiologist and Feeding Tube

14 Weeks 3 Days

1 day old
14 Weeks old
Look how small that hat is on her now!

So, I have not posted in awhile. I have been busy feeding her. It is almost all I do unless I can get someone to help and even then she has been less interested in taking a bottle from others than she is from me... it is mind numbing and exhausting, but worth it!

At her last cardiologist appointment they threw around the "F" word.... aka feeding tube... They said she was not gaining enough. She was gaining about 3/4 of an oz per day and they wanted her to gain an ounce per day. I went into hyper feeding mode and for the first couple of weeks she gained more than an ounce a day, until she hit 8lb and then she just stopped. I wondered if she just forgot why she eats because she had a bottle in her face all the time. I tried following her cues again. I begged on facebook for volunteers (thank you so much to those that responded) to feed her in the mornings so I could give my son the attention he was desperate for. I set alarms so I could feed her in the middle of the night and my husband got up early so he could feed her before work. I spend an entire therapy session with the OT talking about feeding issues. She STILL was not gaining an ounce per day. I decided to quit my job and not go back to work so that I could care for her full time for the foreseeable future. 

It bothered me because she is in all other ways acting very healthy. She is awake for most of the day 8am-midnight. She is chubby, she is very active and alert. It was not that she was too tired or lethargic to eat either. She is just FULL. She would pull the bottle out of her mouth with her hands, bite the nipple or suck milk in to spit it in your face. She was actively fighting being fed. 

So... today I dressed her in the heaviest outfit that I thought I could get away with and I braced myself for a fight against the tube. When we got there they said that they were not concerned. She was barely below what they want her to gain and she was in the 50th percentile (adjusted for DS and prematurity) for both weight and height. 

The good news didn't stop there though! Her VSD is almost closed and her PDA may close also. She still has an ASD that will need to be operated on, but she is doing so well that they may wait until she is past 6 months old to do it. 

Prayers are working! Please keep them coming!


Tuesday, May 15, 2012

Should I Be Offended?

As you may have read earlier, I have been watching a lot of Futurama on netflix while I pump and feed Adaline. Well, the time came when I had watched all 100 available episodes and needed to look for more mindless entertainment. I stumbled on a show called Workaholics and decided to give it a try. In one of the episodes there was a character with down syndrome. My instant reaction was "Should I be offended by this?"

If you have been reading this blog long or know me, you probably know that I can be easily offended. A good example would be the mental list of things people have said to me about Adaline that have offended me that I am debating I should write a blog post about or not.

However, there is also a long list of things that many people are offended by that don't offend me. One example is the "R" word. Whenever I would see the campaigns against the "R" word before I knew I would be Adaline's mother, I truly thought it was a waste of someones time. I am honestly still not offend by the word. Granted, things may change as Adaline is able to understand names and be hurt by them, but for now it is something that doesn't bother me. I want my kids to learn not to define themselves with one word. Good or bad, true or not. Whether they're mostly known for being disabled or as a star athlete, I want to instill in them to always remember they are much much more.

I do however realize that I am in a new circle and many, if not most of the people in it probably are understandably offended by such things, so I do want to be respectful of that. It is hard though. With the list of taboo things not to say growing every time I find a new blog, I have a hard time communicating what I am trying to say. For example, the term "Special Needs" also seems to be becoming taboo. It is becoming hard to describe my daughters condition in less than a paragraph.

Back to the original topic, I decided to query the internet to see if I indeed should be offended by the role that this actor with down syndrome played on the show and I was surprised to find out that most parents were not offended. Many found it refreshing.

So, how have I decided to feel? I decided that I am a bit offended, but not because of the way the person with down syndrome was portrayed, but because the show itself is a bit offensive. :). I actually love the role he played. He was just one of the guys. He had wit and even rescued the guys in one scene. It was very tastefully done. My favorite part though was how the writers even poked fun at how people react try and be politically correct to retarded, special needs err...(however I am supposed to describe what I am getting at here). In the first scene the actor introduces himself to the main characters as the ISP supervisor. When they slightly question him, his response is "what, don't you think I could be an ISP supervisor? The guys immediately stumble over themselves to find excuses other than the fact that he was born with down syndrome as to why they would question him. The actor then tells him he has found a lot of porn and that he can be bought to keep quiet. It is later revealed that he is the brother of their boss and not the ISP supervisor. In a later scene the actor and the main characters are trapped in an impound lot. One of the main characters happened to have a strippers police suit in the car that we were introduced to in another scene and the actor put it on to save the guys from the owner. Again, the impound owner looks confused as to if he is truly a cop and then stumbles over himself to be politically correct when he is questioned on it.
It pretty much sums up how I feel when trying to stay respectful in this new circle we are in.

Sunday, May 13, 2012

Sensory Blanket

11 Weeks 6 Days

Adaline's therapists have been suggesting that I cut up pieces of fabric with different textures for Adaline to hold. I get the getting her to grip different things, but I don't understand why "sensory" is so important. When I would look at blogs for ideas for things to do with Jamin, I see things to put in "sensory" bins and have always dismissed them as boring or unnecessary. However, the experts know best. I was worried that with Jamin around little scraps of material would get everywhere, so I decided to make something to hold them together.

So... I made a quilt. Adaline's great grandma was kind enough to let me raid her fabric stash for various fabric textures. I used black and white fuzzy dot material for the center and a primary color backing since I had that material on hand. I decided to tie it on the back so that the ties would to distract from the textures on the edges. I had planned to either tie the strings in a bow or trim them short, but as I was working on it, I set Adaline down and she seemed to really like holding on to the ribbons, so for now the back is quite shaggy. I was worried about the ties looking good on both sides, but you can barely see them on the front, so it all worked out. Hopefully Adaline's OT that is coming tomorrow will be impressed.

Does anyone want to explain why "sensory" is THAT important?

Wednesday, May 9, 2012

Cardiologist

11 Weeks 2 Days

She got a fairly good report at the cardiologist. I really like her doctor. After the eye drama, she told me to call her before we refer go to any referrals in the future, because she knows a great pediatric ophthalmologist in Grand Rapids she would have sent us to.

Her VSD is closing and she is not showing many symptoms of heart problems because of it. She will still need surgery around August for the other issues though.

She is not gaining enough weight though. Last time they told me she should be gaining about .5 oz per day and this time they told me it should be more like 1oz per day. We are going to fight a bit harder to fatten her up, but they are threatening a GI tube if she doesn't gain better :(.

Jamin went with me for the first time and did really well, especially considering we were there for an hour and a half. I brought the portable DVD player and he watched that most of the time. He was adorable and got a lot of oohh and aahhs from the nurses.

Tuesday, May 8, 2012

Therapy, Ann Arbor and an Awesome Big Brother

11 Weeks 1 Day

Last week the Special Ed team came to evaluate Adaline. Most of the session was me signing more paperwork. I don't get that part... I feel like am secretly co-signing on a mortgage or something with all that there is to sign. I don't understand why it is needed. Would someone really call them out to their house then insist they not help their child? One piece of paperwork was to wave a 7 day waiting period in which I could change my mind if I wanted their services or not.  We also learned that special ed follows the school schedule, so they don't work for most of the summer........... I was not pleased to hear this information.
At my prompting however, the PT did do an evaluation and gave me some things to do. She was supposed to meet with us again on Wednesday, but called Sunday night to cancel........
The highlight of this meeting however was when she asked me if I owned a vibrator and she strongly urged me to purchase one if I did not have one. I gave her an "are you really asking me this?" look and she did not flinch. My thoughts turned to me walking into an "adult" store to buy such an item and assuring the cashier that it was for my 2 month old daughter and where their mind would go with that, then to "wait, what on earth is she getting at with this anyways?". I don't remember what lead us to get on the same page, but she was actually talking about a massager. Which as it turns out we do indeed own. We are supposed to put it on her body to help her realize that her limbs belong to her. She also suggested getting scraps of different textured materials to put in her hands. I have taken this a step further and I am working on making her a sensory quilt. Her great grandma has an extensive fabric collection and she let me sift through it for different textures.

Yesterday we got some more fantastic news. It all started with the last early on evaluation. Most of the things the noted her as behind in required her ability to see, so I was concerned that maybe something was wrong with her eyes and I began to start asking questions. A friends sister in-law is an optometrist and she mentioned retinopathy of  prematurity. Prematurity and oxygen use are two risk factors for this issue and she had both, but was never evaluated for it. I called Ryan's optometrist and the suggested an ophthalmologist that they just raved about. They said they were great with kids. We made an appointment and when I showed up it turns out that they share and office with them... which she failed to mention on the phone. The guy didn't really seem like he knew what he was doing with someone her size, but felt that her eyes were hard. He got out a tonometer and said that her eyes also measured high as well. He wanted to dilate her, but said there was a risk of an emergency and said he was unsure if he should do it or not. I asked if we should wait until we could be in a place where the emergency could be handled and he said he was going to send us to U of M. Since my family is awesome, my husband took the day off and my mother-in-law agreed to watch our son and we set off to Ann Arbor. It was actually quite nice to have some time trapped with my husband. We ate at the Blue Tractor. My husband and I spend our third anniversary in Traverse City and we ate at one there. They had 5 kinds of macaroni and cheese on their menu. For those of you that don't know me. I could live on the stuff. I LOVE IT, so when I saw that they had one there, we just had to eat lunch there. This place only had 1 kind and it was not as good as either of us remembered it, but it was still good and enjoyable.
We arrived at the appointment about 20 minutes early. U of M had called the week before to get insurance information, so we didn't have much paperwork to do. They called us back well before our appointment time and did some initial tests. The doctor (who looked younger than me), said she didn't see anything wrong so far, but she wanted to do a complete exam. She put some drops in Adaline's eyes and then sent us back out to the waiting room to wait 30 minutes for her eyes to dilate. We arrived back in the waiting room about 1 minute after our appointment was supposed to start. 2 thumbs up to their time management!! As we watched other patients be called back. I noticed that ALL of the doctors looked like Doogie Howsers to me. I realized this makes me old since people younger than me have had time to get through med school AND because I know who Doogie Howser is. After the full appointment, the doctor explained that Retinopathy of prematurity is much more common in 1 or 2lb babies who needed O2 right away. Since she was almost 5lb and only on O2 2 weeks after birth, she was not at very high risk. She also said that doctors who don't see kids have a hard time getting accurate eye pressure measurements. When you need to hold their eyes open to get a reading, you are putting pressure on the eye and creates a reading that is falsely high. She used a different meter and did not find her pressure to be high. She concluded that she couldn't find anything wrong at all. She wants to see us again in 2-3 months just to make sure because the other doctor was concerned, but she is not concerned. I am going to ask the cardiologist at our appointment tomorrow if we can coordinate the visit with her heart surgery.


For the last part of my post I want to talk about my son who melted my heart today. I am going to bring him with me to her cardiology appointment tomorrow so I was talking to him about it. I told him that sisters heart was broken and that later this summer the doctors were going to fix it, but we needed to go to the doctor a few times before that. We were upstairs and Adaline was doing tummy time. He ran downstairs and got a big heart sticker that he got from daycare on valentines day. He stuck it on her back and said. "I fixed her heart, it's all better now".


A Q&A With Myself About The Role God Played In My Daughters Bonus Chromosome

I feel it is important to share my feelings because A. It is therapy for me and B. I want to be a voice for other parents facing a similar situation. I want them to hear voices like mine louder than they hear the voices of some medical professionals who wrongly think the world would be better without kids like ours.

As I mentioned in a letter that I published on this blog before my daughter was born, I do not think that Down Syndrome is something that God gives someone. This is why I prayed that my daughter would be healed and born without it. However, now that she is here, this had raised another question for me and it took me awhile to get to an answer.

Q. If Down Syndrome is not from God, does that mean my daughter is not from God?
A. No, since the fall of man, we all fall short of what God intended for us. Adaline is no exception. She may have an extra chromosome that will require her to have heart surgery and that may keep her from reaching milestones when her peers do, but we all face something less than what God intended for us. Some of us will be prone to cancers, some of us will be prone to addictions, some of us will love gossip and an the list goes on.

I often here the phrase that someone is who God made them to be and now I feel that that phrase is inaccurate. No one on earth will be who God made them to be (except for Jesus). God will use everyone (even Joran VanDerSloot) to play an irreplaceable role on the earth though. I have stopped saying that someone is who God made them to be and replaced it with "They are exactly who the world needs them to be".

Wednesday, May 2, 2012

How Joran VanDerSloot Helped Me Cope With My Childs Down Syndrome Diagnosis


Looking back, the hardest part of my daughter's Down Syndrome diagnosis was the reaction of some of the medical professionals. I am not close friends with anyone with family with Down Syndrome, so I have not had a chance to walk with anyone in that. However, my first perceptions were not horrible. I knew that the Williams spent time, money and heartache to get an additional child born with down syndrome, so it could not be that devastating. I knew that other people said they are wonderful children and a blessing to all that know them. I knew that there were associated challenges, but also associated joys. However, there is just something about someone with a PhD kindly offering to help you end the life of your child that really gets your mind going. They are smart people right? Of course, at the time, I was 19 weeks pregnant, so I would have had to travel to another state to have the procedure done. It makes you think it must be pretty horrible to have a child with down syndrome if it was worth all that trouble to make sure they were never born.

I am thankful for all of the parents out there who do have children with down syndrome who have been willing to share the joys and the fact that their lives are not only worth living, but they are GOOD!

Oddly enough, I am thankful for Joran VanDerSloot. He has reminded me that choosing to bring a life into the world is risky. I was so mad that God would give us a child with not only down syndrome, but a heart condition that will require surgery as well. Especially after we went through infertility and a molar pregnancy. Joran reminded me that even if I easily conceived and gave birth to "perfect" children, you never know what tomorrow may bring. They could be hit by a car, they could get cancer as a child or they could be lacking basic human morals and an understanding of right from wrong. I bet that there was no sorrow from the medical professionals when they told Joran's mother that she was going to have a baby. I doubt that anyone suggested aborting him. I can tell you however, that I would be much more devastated to be his mother than to be a mother of a loving child that will never be a rocket scientist and who may take a bit longer to reach milestones.

As for what is so horrible about having a child born with down syndrome, I have not figured that out yet.
My life has indeed changed dramatically since she has been born, but that is much more due to the fact that I have an additional child who requires late night feedings and diaper changes than it has anything to do with her bonus chromosome. The stories I have been told by people who know people with down syndrome who tell me how wonderful they are are much more my experience that the sorrow that the doctor suggested I would feel. I can already not fathom what life would be like without her, nor would I want to find out.

Tuesday, May 1, 2012

To Ann Arbor to see an eye specialist

10 Weeks 1 Day

I took Adaline to an eye specialist today. The person (nurse?) that did the pre-doctor questions was not super bright. She asked what Down Syndrome was and some other weird questions.

The doctor said he was not very concerned about the reason I brought her in (Retinopothy of Prematurity) since she was over 4lb at birth. They are most concerned with 1 and 2 lb babies. However, he did notice that her eyes seemed hard and he tested them and they measured a bit hard as well. Her eyes need to be dilated to do a full exam and with them having high pressure, it can be dangerous. SO.... we have to go to Ann Arbor on Monday to have her eyes dilated at the hospital where there is a team there should she have complications. The good news is that if she does indeed have Glaucoma or Cataracts, they can be surgically treated, but I worry that the test for it sounds so dangerous...

Friday, April 27, 2012

Donation Cards


We have been asking for donations to specific children on Reeces Rainbow for my 2.5 year old for about a year and half for Christmas and Birthdays. For each donation, I ask the person donating to fill out a card so that we can place the card in a photo album we have for him so that when he is older he will have an album full of kids that he helped bring to forever families.

Little did we know that a bit over a year after we started working with Reeces Rainbow that we would have our own child with Down Syndrome. (God was obviously at work here). In celebration of her birth, we have asked people to make donations to Reeces Rainbow and/or pick out a specific child to pray for in her honor. I am working on making donation cards to be printed for Adaline's album. Would those of you who donated please let me know that you did, the name you would like put on your card (for those of you I do not personally know), the name of the child you donated to and if you would like a bible verse put on the card (please include a verse).

Here are the donations I already know about, but need more information on:
Kellans Mom for Justin
Traci for Kiki and Debbie
Aunt Debbie -General Donation?

Thanks!!

Wednesday, April 25, 2012

Early On / Questions for other parents

9 Weeks 2 Days

Today we had our first visit from Early On. Adaline did her best to sleep through it. She is not a morning person (a girl after my own heart).

They said she has pretty good muscle tone and gross motor skills.
The were concerned with the following:
She will not retain a object put in her hand
She does not follow objects visually
The are concerned with the social emotional in that she does not visually follow people and they do not feel that she expresses displeasure well enough.
They are also concerned that she will not suck her thumb.

The good news is that she will qualify for in home therapy every 1-2 weeks. I am excited to get started and get her on her way to becoming all that she can be.

We set up a "goal" for her to be at her age level for skills by age 1.

So, here are my questions for other parents with children with down syndrome. I would LOVE feedback in the comment and please forward this post to anyone else who would be willing to respond.

  1. What were your experiences with Early On?
  2. How often did your children have therapy at this age?
    1. Did you think it was enough?
  3. Noahsdad.com has Noah in therapy 4 times a week. Do you think that is necessary?
  4. How do you keep all of the paper work organized??? Binder, file etc? Does anyone know of  a good computer program where I could scan her information and keep it electronically?

Sunday, April 22, 2012

Fact vs Fiction About How My Child with Down Syndrome Looks


When she was born, I was surprised at how perfect, normal and human mydaughter looked. I am not really sure what I was expecting. I have seen other children with down syndrome and none of them have 3 eyes or anything like that, but it still seemed odd to me how perfect she was. One thing that has stuck with me was when the doctor originally thought something was wrong, she told me that having an extra chromosome was like having bad blue prints. When you build the house it is not stable. I guess I envisioned a human version of an Escher drawing or the leaning tower of Pisa or something. I also would look at pictures of other kids with down syndrome. Many of them have some pretty weird features I wondered if my baby would have them as well. However, when I saw pictures of these babies with weird features with their parents, I think that their other 46 chromosomes have more to do with those features than their bonus chromosome. Trying to imagine someone else's baby who was born with down syndrome as mine is just as weird as imagining someone else's baby who was not born with down syndrome as mine because God did not intend those children for me.

It is possible my daughter is also guilty of having weird features that go unnoticed to me that the other 46 chromosomes are responsible for, but they are what make her mine. I am still in awe about how perfect she really is. She is in no way a human Escher drawing or like a house built with bad blue prints or the futurama sewer mutant that my fear lead me to believe she might be. 

She has 10 perfect fingers.....

.....10 perfect toes....


...and perfect little nose..


.... a beautiful mouth...

... and gorgeous eyes that are a deeper blue every day. - Credit SJL Photography
She is a perfect little sister for my son... - Credit SJL Photography



...her Daddy's little princess...

...and her mothers beautiful daughter.  - Credit SJL Photography

She is exactly who the world needs her to be! - Credit SJL Photography 



Saturday, April 21, 2012

Thyroid NORMAL!!

Another strike against a certain doctors office..... After calling 2 weeks ago to tell me that Adaline's Thyroid was high, that we had to repeat the test in 2 weeks, that the results probably would not change and that we would need to see yet another specialist to get it treated AND 2 weeks of worry for me..... we got a letter in the mail to let us know that her second test came back normal...... REALLY you couldn't call and tell me that?

Friday, April 20, 2012

Jenks Adoption

There are some really cute bows and Down Syndrome awareness bracelets for auction right now for a family who is adopting two children. Please check it out!

Jenks Adoption Auction

Thursday, April 19, 2012

Update

8 Weeks, 3 Days

Ok, I know I have been a total slacker on updating this blog. I see in my traffic feed that many of you have been checking in regularly and I am very grateful for that!

I am going to try and do a quick post about the major events in the last weeks.

Adaline was in the hospital for one and a half weeks with RSV. They finally sent her home on oxygen and she was able to get off of that a week later. She is now in heart failure. The RSV probably put her over the edge, but it was not something we were not expecting anyways. She is on medication for it and doing well on it.

The cardiologist suggested we see a gastroenterologist since she was not pooping every day. I was not super concerned because she is mostly breastfeed and from what I can tell, breastfeed babies do not need to poop every day. While we were waiting to get in with the GI doctor, the pediatrician suggested that we mix corn syrup in her bottles. It worked like charm and she was very regular. When we saw the GI PA, she told us to stop the corn syrup and start Miralax. They also wanted to run a bunch of tests, but I declined them because she was going well. They saw she had lost an ounce since her appointment last week, so they made us see a nutritionist who told us to start mixing formula in her bottles to give her more calories. The frustrating thing however is that the last time they weighted her she had a very wet diaper and was fully clothed and this time she had on only a clean diaper..... When we got our visit summary, it showed her diagnoses as "failure to thrive" and "constipation". It made me very angry because the did not weigh her accurately and SHE IS NOT constipated. When she goes it is nice and soft, she just doesn't go often. Against my gut, we started giving her the Miralax and she had a diarrhea explosion. So, then I stopped the Miralax and she didnt go for a few days and when she did go, she screamed in pain. I ended up taking her in the tub to try and help the pain while she pooped. We started the Miralax again and she still doesn't go every day and when she does go, it is very loose. I am not sure what to do now.

The GI PA also wanted her thyroid checked.  They called a few days later and said it was high. They said we needed to repeat the test in 2 weeks and then we would need to see an endocrinologist. I was so frustrated because it seems like everything that could go wrong with her was going wrong.

The next week we saw the cardiologist again (whom I really like). I told her we had a scale at our house and I am keeping track of her weight at home and she is gaining well. I told her about the thyroid and she said it was common for kids with down syndrome to have low TSH levels. I told her that it was her T4 that was high and she said that that could not be right. She check the results and saw that her T4 was indeed high, but not by much at all and she did not think we should be concerned, so that was a relief. We got her blood drawn again yesterday, so we will see how that ends up. No calls on that so far.

Overall, Adaline is still gaining weight well. She is getting more active. She is also getting a bit more vocal about being hungry and especially when she wants attention.  We still love her to bits.

I have a bunch of blog posts that I have started in my head and I will try and get them down and post them soon.

Wednesday, April 4, 2012

Store

6 Weeks 1 Day

Now that I have my girl, I have been having a lot of fun making things. I decided to make another blog to display the things I make incase someone is interested in purchasing them. You can also get a sneek peek at the photoshoot we did with Adaline on Saturday!

Thursday, March 29, 2012

Random thoughts

4 Weeks 3 Days

Sorry I have not posted. I have either been too busy or just not in the mood to talk about the stuff going on here.

So I have some random ponderings:

1.  Have terrorist organizations considered using breast pumps as torture devices? They would be very effective.
2. Whenever I pump I watch futurama on netflix because it is short and mindless. Should I be concerned that if years down the road I catch an episode that I will start lactating again?

Tuesday, March 13, 2012

Second Ambulance Ride in 2 Weeks of Life.

2 Weeks 1 Day


Adaline and I have now ridden in an ambulance twice in our lifetimes. It took me 29 years and it took her only 2 weeks.

On Saturday night she started getting more congested than she has been and by Sunday morning she was refusing to eat. She had to work so hard to eat, that by the time her next feeding came around she was just too tired to do it all over again. My husband and I were ready to take her to get a feeding tube, but I called the pediatrician and she said that as long as we can get half of what she normally gets down, she would be OK. We were getting that much down, but she was skip feedings occasionally, so we worked with her. On Monday morning I called to get her an appointment and the earliest they had was 3:40. Around 11am she was doing this really heavy breathing. When she was in her bouncy seat the whole seat was bouncing she was breathing so hard. So, I called the pediatrician back and they said to bring her right in. Her O2 level was in the high 60s so they called and ambulance and sent her straight to the hospital.

What a difference some O2 can make! She sucked down 60ml of pumped milk (she was only taking 45 when she was healthy). They took her off of the o2 last night, but she didn't do well, so they put her back on it again this morning. They think we may be here for a few days or longer. We just need to wait for her little body to fight the virus off.

Tuesday, March 6, 2012

Birth Story

1 Week 1 Day

This blog was originally created as more of a baby book and to keep friends and family informed about the pregnancy and Adaline. I realize that I have a much wider audience than I originally anticipated and I am grateful for that, but I also want to keep this blog focused on its primary goal. This post is quite long and rambling, so I have added some warning markers for those of you who do not want to read it all to more easily navigate to the good stuff :).
  
I will start where I left off on the Babymoon and other long ramblings post, so you may want to read that if you are new.
Adaline and I in our new chair.

Warning: this whole section is about a chair, you may want to skip it.
On Sunday afternoon, my husband and I decided to finish where we left off on Lazy-boy shopping. We had to pause a few times for some mild contractions I was having, but it was nothing major or close together. I had my heart set on the golden retriever chair and my husband had his heart set on anything but that chair. We went to a few more places and did not find anything I liked better, so I asked if we could go back and see the chair... maybe it was not as awesome as I remembered? It was as awesome as I remembered, however only in the reclining position. When just sitting in the chair and rocking (which I assumed I would be doing a lot of), I had to slouch so far down, it would have been very uncomfortable. So, my husbands wish came true and the golden retriever would not be going home with us. We found another chair at the store that was comfortable, fit both of us well and was in the correct price range, but it was ugly. Ordering it in a different color would have cost $100 more and taken weeks to get. Ugly is not a big deal to me. Since we have been working for the last 6 years to become debt free, we have only purchased our bed and a crib new. Everything else has been a hand me down or a gift so it is not like an ugly chair would be out of place. My husband was eyeing up the leather chairs. I asked if their prices were firm (because I do that everywhere) and the first sales guy said yes. That store knows their stuff when it comes to dealing though and then we got a second salesman who took over. He said he had a discontinued floor model that we could make an offer on. My husband said he had no idea what to offer, so the sales guy offered $550 (regularly $675). He said he would let us talk it over. I told my husband to offer $500, but be prepared to be ready to take it and not change our minds. He did and the sales man said he would accept the offer if we shook on the deal right there. We may have been able to get it for less, but I feel accomplished, so we are the proud owners of a new chair.

This one is about dinner, you may want to skip it as well :)
After we got our new chair loaded, we started talking about dinner. Nothing specific sounded good to me so I prodded my husband for ideas. He didn't seem to have anything he was craving either. Then he said that someday he would like to go to a pricey Chinese place a few towns over. I said "lets do it!" we are kid free for what might be the last time in a long time. So we did it. We made the trip to a town is praised for its good school system and kind of the it place to live that is still near the city we live in. We got there and they said there was 4 tables ahead of us. People that eat at this place are snobs.... They have a small waiting area and everyone sitting in it was young and fit and clearly saw that I was quite pregnant. Not one of the 10 of them offered me their seat. My husband who is usually pretty passive even asked me if he wanted me to ask someone to move. I loudly declined his offer saying I wanted someone to do it on their own accord. I know the family standing next to me heard me say it. When a spot opened up, that family raced over to the empty spots ahead of me... Then the hostess came over and said that their large table opened up and if a total of 8 people wanted to sit there, they could seat us all right now.  All but one other family declined and we were ALL stuck waiting longer while the table remained empty. The food was worth it though! It was very good. With my son, my "last meal" was Qdoba so ethnic food must do it for me.

OK, now we are getting closer
We asked our neighbor if they would help us unload the chair and then showed them the nursery. I tried to get some friends to go out for a drink (obviously I would not be drinking), but only one person was available, so we decided not to go. I slept in the new chair (it has an overpowering leather smell). For at least a month now I would have a contraction when my bladder was full. I had a few of them that night, but I chalked it up to the chair and moved to the couch (my bed since October since I have been sick) and slept well the rest of the night.
The next morning I was pretty uncomfortable. The doctor had told me that if I went into labor after 36 weeks, that they wouldn't stop me, so I could labor at home and come in when my contractions were 5 minutes apart. I remembered being pretty uncomfortable for a few days before my son came and I really didn't want her to come this early, so I decided I should go to work. We traded cars with my mother in law so she had the car seat and the 4 wheel drive car and I assumed that since my husband knows what a bad driver I am he would have taken his moms car and left me our other one. He didn't. So I called and chewed him out. He offered to come back from work to trade me, but I put on my big girl pants and decided to drive it. This meant I needed to get a temporary parking pass from my employer which took time to do and I got to work about an hour late. I wrote my husband an email to apologize for overreacting and told him I might have him take me to my 2pm appointment because I was not sure I should drive. About an hour later one of the students who works for me came in. I work in IT, so I am surrounded by men. I told him that I thought I may be in labor. He asked in a somewhat panicked voice what he needed to do to help. I told him not to worry because birth isn't like it is in the movies. Labor is a long process and babies don't just come like that. My contractions started be come more painful. I wrote my husband a text to come get me, but once the contraction was over I felt fine and didn't send it. 3 contractions later, I sent it. He came right away and when he came in the office I was telling my co-worker how to do something like nothing was going on. When I stood up to leave I had a really intense contraction. My back was to my poor co-worker, so I am not sure if he saw or not, but it was all I could do to not scream. I made it the 10 minute drive home without any more contractions. I went upstairs to get some more comfortable clothes, when back downstairs and while I was changing, I decided to go to the bathroom. As I was going, I heard a swoosh and swore. I REALLY didn't want to have her today. It did not sound like as much water as I would expect though and since they broke my water for me with my son, I wasn't sure if it was the real thing (or maybe I am just really good at lying to myself). Since the midwife told me that I should come in if my water broke, I decided to call her. I got her voicemail just as I was having another contraction, so I hung up. I tried to call the office, but got the menu and then had another contraction, so I hung up again. Just then the midwife returned my call and I told her I thought my water broke. While I was on the phone with her I got very light headed and I told her I was going to pass out. She told me to come into the office and I screamed for my husband and then hung up (I don't remember if I just hung up or if I said anything else to her). My husband came down and I told him I was going to die and to tell my son I loved him. I never felt to like I was going to pass out with my son, so I thought something was seriously wrong. The midwife later said that the baby probably hit my pelvic floor which dropped my blood pressure. I thought I might be feeling her in my pelvis, but I didn't want to check because I didn't have sterile gloves. I was starting to feel more stable and with the next contraction I told my husband to call an ambulance. I am not sure why I did this because I was still telling my self she was not coming today, but I think a part of me may have known that she wasn't waiting. I think I knew there was no way I could get myself in a car to go to the hospital. I was not paying attention to if my husband was actually calling 911 or not so with the next contraction and said in a deep meaningful voice "CALL AN AMBULANCE". Just then I heard him connected with the 911 operator and tell her I was in labor. He said this was my second child and I felt something wasn't right. I could hear her tell him to have me lay on my back and since I was not in a place to talk I showed him the bird. He very cordially said something along the lines of "She doesn't want to do that". They asked him if he could see a head and since I was standing up we did an awkward little dance before deciding that we were not going to find out. Since I was in the middle of changing when all of this happened I was only wearing socks and a bra. Something about labor makes me hate clothes and I remember trying to get my bra off during a contraction and my husband asking me why I was doing that. I don't remember getting it off, but I wasn't wearing it later... He tried to coax me into my sons bedroom. I was worried because it was fully carpeted and I didn't want to make a big mess. Then I remembered that we had a waterproof pad on my sons bed in the event he had an accident. I got on the bed but did NOT want to be on my back. I decided to stay on all fours. The first responders started to arrive. One of them put a glove on my hand and asked me if I could feel the head. I asked if it was sterile and felt for the head. It was RIGHT there. I didn't have time between contractions to tell him it was, so they began making plans to try and get me to the hospital. I had the urge to push with the contractions but I kept saying to myself "I don't want to do this today, I don't want to do this today". Then I said "here she comes" I thought she was out and I said "get the camera, I think it is in the living room". My husband gave me a look like "really" and he took a picture with his phone. Then they said, give another push when you are ready. I asked why and it turns out that only the baby's head was out. So, that is why my husband gave me a look when I asked him to take a picture. However, no other pictures were taken :(. You would think with 15 people looking on, one of them could have looked for the camera. I suppose they felt weird about taking pictures with me dressed like I was. She cried when she was all the way out for a bit and they gave her apgars of 9 and 10.
Next they had me pull her through my legs and lay on my back. We did our best to avoid the messy spots, but it is hard on a cushy mattress. They gave me a few minutes to deliver the placenta, but my contractions had stopped (just like with my son). They got a robe on me and put her inside of it with me. Her eyes were open and she was just taking it all in. Our house was built in the 50s, so it has some pretty tight corners and they couldn't get a stretcher in to get me so they had me sit in this chair and strapped me down. I thought I was going all the way to the ambulance, but they just took me to the porch and then put me on a stretcher. I was like "I think I could have walked that far". I asked how we were going to get her to the hospital and they said she would ride with me. I said "she doesn't need a car seat?".
When we got into the ambulance, we sat in there for a bit and they said they needed to start an IV on me. Just as he was about to poke me that driver said "are we ready" and I very quickly said "NO!".  When we got to the hospital, my midwife was waiting for me with a big smile and said "Well, you got your natural birth". I was a bit worried they would be mad at me for having her at home, but in my defense I was at work less than 40 minutes before she was born, so I think they understood that I didn't do it on purpose.
They took me into labor and delivery and the midwife began poking at my stomach and trying to get the placenta to come out. It hurt SO much. After maybe about 15 minutes of trying my OB came in and tried. I begged for drugs. With my son, they put me out to have the placenta delivered. They gave me some morphine and it was still unbearable. I begged for more. They gave me a morphine shot in my leg and it still didn't seem to do anything. I made eye contact with everyone around me asking for drugs and they just looked away without saying something. I said "is that a no?" They delivered the placenta, but were worried there might be more, so the OB stuck her hand in (yes, all the way) for a feel.  I don't remember much of what happened after that though, so I think the drugs may have something to do with that. I think I called my Dad sometime after that. Adaline was not as warm as they wanted her to be, so they had me do some skin to skin. They said her blood sugar was at the very bottom of normal and she wasn't interested in nursing, so they suggested giving her a bottle. I said I was fine with that and asked for donor milk. They said it takes a long time to warm up, so we ended up giving her some formula. She drank it like a champ (feeding issues were one thing that they were worried about, so that was nice!). I remember it seemed like we were in the labor and delivery room for awhile waiting for another room. Around 5 or 6 they wheeled me in to our room. I guess they had a baby boom that day (the kept bragging about how they had 12 c-sections, which we thought was odd) so they were out of mother baby rooms and we were put in a antinatal (high risk pregnancy) room. Shortly after we got into our room my mom, step dad, mother, father and brother in-law and son arrived.

With the exception of the placenta, I could not have asked for a better birth. I am a big supporter of home birth in the right conditions, but with legislation the way it currently is in our state, even if she didn't have the health problems that she has, I would be a bit concerned about delivering at home. I hope our medical system can work toward a safe system of coordinated care because this birth was so great. Granted it was short, but I was able to just listen to my body and it did exactly what it was supposed to do. The EMT's were great and followed my lead. They didn't make me get into a different position or make any threats. I feel like I got redemption for my sons birth and that has really helped me bond with my daughter as well.  When I think about how everything went, I think God was looking out for me on this one. Had a gone into labor just minutes earlier or tried to work through just a few more contractions, I would have given birth at work and scared my poor employee. My husband may not have been there and it wouldn't have been a home birth... and I am not sure I could look the custodians in the eye after they had to shampoo the carpets. :). Had I gone into labor just hours later, I would have been at my 2pm OB appointment and they would have seen that I was in labor and admitted me. Maybe they would have felt she needed a C-section... Most Mondays my mother-in-law is at our house with my son, but because we were on our babymoon, he was at her house. This meant that I didn't have to worry about him. I think he is a bit young to understand labor pains. ... it was all part of a perfect plan.

Lastly I have to thank my support system! My mother-in-law watched my very active son in addition to cleaning the murder scene in my sons bedroom. It took 3 washes to get the blood out of the mattress pad, but she did it. She also did many other loads of laundry so we would have sheets and clothes to bring Adaline home in. My mom and step dad went to every store in town and bought every preemie outfit available (not a great selection out there) so she actually has clothes that fit her! My Dad brought cases of snacks so I have something quick to grab and eat during feedings. Lastly I need to thank my husband who was and is a rock star! I do not think I would have reacted half as well as he did. He seemed cool as a cucumber the whole time. I think I would have been a worthless wreck in his shoes when I said "I am going to die, tell my son I love him.", then "call and ambulance". While I was in on the bed surrounded by the first responders he had his game face on and looked more up to the task than most of the rest of the peanut gallery in the room. He told me I was doing great and that she was breathing and moving. I would really expect most men to be passed out in a corner with what I put him through. While they were getting the placenta, he was right by my side and held my hand the whole time. At one point he had blood on his hand and I thought it was his blood from squeezing his hand too hard, but it was mine.

Monday, March 5, 2012

Adalines first week

1 Week
Sleeping during tummy time

So tiny!


Big Brother is SO proud

First bath

More tummy time naps

I have been working on the birth story to post, but it is taking a long time. I wanted to do a post about her first week, so I am taking a break from the birth story.
I cannot believe she has been with us for a week already.
I love being this girls mommy. It really does seem like this week flew by, but I guess you lose all concept of time when your life is planned around 3 hour intervals.
Adaline is doing SO well. We planned on spending weeks in the NICU after she was born even if she was on time, so the fact that she went home after 48 hours being one month pre-mature is SUCH a blessing. I am feeling great too. The most pain I have been in since we have been home has been from the whooping cough immunization they gave me in the hospital and I have enough energy to keep up with our breastfeed/ bottlefeed/pump schedule. This was not the case with my son (I don't remember much of his first month) and I am just so happy to be such a big part of this girls first few days.
When she is alert, she is very alert and looks around. She even likes to grab the pump tubes while I am trying to pump. However, when she asleep, she is asleep. This makes breastfeeding hard because if she is not awake, she will only take a bottle and even then it is hard to get down her sometimes. She is super stubborn, but I would expect nothing less from my children. We are trying to get her to do her 4 times a day of tummy time, but she will just sleep through most of it, but when you put her in her crib she will just lay there wide awake and looking around.
When you unswaddle her she makes the cutest little stretches and with it come squeeks and snorts. She and her daddy took a nap on the couch yesterday (while I supervised) and it was quite the choirs of snoring.
The last couple of days she has spent much more time awake and has even breastfed quite a bit, but since last night she has been pretty sleepy. Growth spurt?
We did have a bit of drama however. We somehow slipped through the cracks and did not have a carseat test like all babies under 5 pounds are supposed to have. On the way home she started to turn blue, so we pulled over, got her out of the seat, turned up the heat and waited for her color to get better. She was very alert and responsive the whole time, but it was scary for us. We put her back in her seat and did not tighten her down as much and then took the back roads the rest of the way home. The next day I called the pediatrician and told them I was concerned about getting her to her pediatrician appointment the following day and asked if there was an agency that does house calls. They said that they needed to see her and I should loosen the belt or go buy some aftermarket parts for the carseat to make her more comfortable (you will see in the birth story that we were very clearly instructed not to do this during the car seat class), so I pushed further and they gave me a phone number to call. I called the number and they gave me another number, then another number etc until I talked about 5 different people across the country. They said we could not loosen the belt (or use aftermarket parts). However there was a bed car seat for tiny babies that their hospital gives away and that ours might do the same or lend us one. So, I called our NICU to see if we could go pick this bed up. They said that they could not lend it without doing a test with her in it first. Then they said that if we brought her back in they would need to admit her and keep her for a week to evaluate her. I explained that she is doing great at any other time except when she was being choked by a car seat that didn't fit her. The lady on the phone basically said that we could not bring her in and not get the car seat or bring her in so they could keep her a week. I somewhat sarcastically asked her how the proposed I bring her in to be admitted and said she she would transfer me to the doctor. However, in addition to people skills, she is was also lacking in phone use skills because she disconnected me and I didn't bother to call her back. I did spend the rest of the day wondering if child protective services was going to come get her though. It just seems odd that I could choose between doing nothing and having her admitted for a week. I called the pediatrician office back to tell them what happened and they said that we needed to get her there......
So, we left an hour before our appointment for what should be 20 minute drive. I rode in the back with her and we did not tighten the belt enough to pass the pinch test. She did OK. I think she was getting herself worked up about being in the seat more than anything, so I just tried to talk to her and tell her she was OK. She got a good report from the pediatrician. She was back to her birth weight, however she had not pooped since we left the hospital, so I assume she was not quite back to her birth weight in reality. Her little belly was SO full that the doctor decided to do the Vaseline on a q-tip trick, it worked a little bit while we were there, but later that evening we had quite a show as we were changing her and every time I would turn around from throwing a wet wipe full of poop off of her changing table away, she would have another pile waiting. We did this about 5 times. Her cord also fell off while we were there. Our sons fell off quite quickly as well. The doctor also told us what we were expecting to hear in that she does indeed have downs syndrome. They are still waiting to see what type though.
Big brother is doing so much better adjusting than I thought he would. He keeps surprising me with the fact that he gets concepts I didn't think a 2.5 year old would understand and it makes me wonder if he is a lot smarter than I think he is, but just doesn't have the vocabulary to articulate it. To me, a big round belly turning into a baby seems like a hard concept to grasp, but he seems to understand completely. It came up to me the other day and said "Baby sister borned". He is such a good helper and will go get things for me that I need for the baby like burp clothes and such. The bad things he does are well intended, but he likes to climb on us while we are holding her and has come close to hitting or kicking her while doing so. He also tries to share his toys with her. He will put a metal truck right over her face and it makes me nervous that he will drop it on her. On Saturday he started having symptoms of a cold and it has been really hard to keep him out of her face and from coughing near her. Because of this and because I am trying to work with Adaline to get her do more breastfeeding and less bottle feeding, we sent Jamin to Grandmas for the next couple of days.
Early-On called today to schedule her evaluation. However, they don't do it until they are one month old for their adjusted age. Which means 2 months from now for her. Do any of you have any suggestions of things we can do with her at home before that? I would hate to lose 2 months of opportunity in getting her started.
Well, it is feeding time again, so I better wrap this up. This has been a fantastic week!