I didn't know...

You know, being strong is a great thing!!! It really is.

But... you have to be careful that you don't hurt yourself and your loved ones in the process!!!

I just realized this... 29 days into this new process of "being strong" and "being okay" and "having all the answers" and "being the only one who can do it right."

So I came home from the hospital last night after spending some quality skin to skin time with Macy while watching one of my favorite feel good movies - The Sound of Music (and LOVING it I might add!) So I came home and said, I'm not going to the hospital tomorrow (while stairing blankly into space). My husband asked why... "I just need a break", I said. "I need to trust them to take care of her and have a day to just feel NORMAL!" **NOTE - I wouldn't do this if she wasn't doing okay, but she is. Yes she has a NG tube back in and sometimes takes part of her milk that way... but she is okay! I call the hospital every 6 hrs to check! Barry is going up to see her tonight!

So I have spend my day cleaning the house, laughing at my all-too-funny-huge-personality-adorable-daughter! and watching my ultra sensitive-testing his ground-best buddy-first born son have fun running in and out of the house playing with friends and being a kid!

It has been really good for me! I love my angels - all three of them! I love my husband too, who is being really helpful lately! I can't wait to have Macy home so we can have more of this NORMAL heaven I am enjoying today! Till then, we continue to do our best!!!

oh, and I am making dinner tonight... I'm so excited... I haven't done this in about a month!

Crispy lemon chicken

Salad with pecans, crasins, cheese, peppers and homemade honey mustard dressing

Roasted beets

Herb rolls

We'll top off the night with a movie of the kids choice and rootbeer and a big bowl of popcorn - extra butter!!

I interrupt this program for a short commercial break!!

Good thing I took my first day off ever from the hospital today, because there is a lot going on!!

First -

My thoughts and prayers are with those in Chile.

Carla, I hope you get in contact with all your family members! Please keep us informed!

Second -

I'm hoping all in hawaii, polynesian islands and asia are getting ready for the possible tsunami. Please get to higher ground and be prepared.

The last thing this world needs right now is more death and homelessness!!!

Angel # 3

A friend of mine who is also a photographer came up to the hospital when Macy was 1 week old and captured some beautiful pictures for me!

Liz, I am so greatful to you for doing this... She is already changing so much and I am glad I was able to catch this time in her life!!

I Apologize

I am not as good at keeping everyone informed when things aren't going ANYWHERE!

I promise I will post about the surgery one of these days.

Macy is not handling her feeds yet. It is just sitting in her tummy and making her upset. So they keep stopping them. I am not sure why she is not digesting it and have been racking my brain about it.

The most frustrating this is... we can't take her home until she is handling food and pooping.

It's almost 2 pm and I am still waiting for the doctors to do their rounds and decide what to do for her.

Any suggestions on whats going on from any DS parents???

I'm a lucky girl!!!

Macy had her surgery today and I will post about that with photos tomorrow. But tonight I want to talk about these three amazing women (and their husbands too!)

They are another IMPORTANT reason why my family is doing okay!! These three woman have NO LIMIT to what they will do for me! It's CRAZY!!! They know me better than anyone and put up with me anyway!

Today while Barry and I sat at the hospital filled with anticipation... these girls played hero for us.

Kira (the girl on the left) and her hubby rescued our poor neglected puppy Zoe and gave her some much needed love and attention! They still have her right now and offered to have her sleep at their house.

Rachel (in the middle) watched my daughter Kyla from 7 am till 10 pm. No complaints, no problems!! That is a long day! But every time I call her she says, everything is great! Kyla is happy! This is music to my ears!

Christy (on the right) had Tommy sleep over last night, got him on the bus today and than watched him after school until 10 pm. This included her husband coaching Tommy's basketball team tonight since Barry couldn't be there. Tommy and her son a BEST BUDS!

This is just a TINY idea of how much they have done for me!! I am truly BLESSED and don't trust my kids with ANYONE more than I do with them! Thank You ladies. I love you and I could not do this without you... and Barry seconds that! We are thinking of a big surprise for you all!

I have the greatest best friends in the world!

(Hubby is in the middle)
Yesterday while driving to the hospital an old song came on...

Chicago's "Your the inspiration"

I couldn't help but think of my husband Barry and how much he means to me!

Everyone thinks I have been so strong through all this, but it is really Barry who has been so strong (which is a surprise to his family!)

People may be surprised at how SOFT he really is, because on the outside he is so strong minded, and sometimes abrasive in the way he communicates with people.

We are coming up to our 4Th anniversary (I know this isn't super long), but I know without a doubt that he loves me more today than yesterday! From my previous experience, by the 4Th year... that loves has whittled away. Not with Barry!! And he makes sure I know it! Here are some funny things about him when it comes to affection etc...

* When he gets home at night, he HATES it if I don't come sit with him. He often says, "Kathy, what are you doing upstairs? You're not on the computer are you? I haven't seen you all day, just come sit with me. I'll even watch something that you want to watch!" :)

* He absolutely HATES to go to bed without me. Sometimes I make him and about an hour later he'll come out of the room with his hair all a mess and say, "I can't sleep, can you please come to bed!" and if I ever go to bed first, without him... it hurts his feelings!

* He often says I don't kiss him enough! I used to be more affectionate... but a bad marriage can jade someone! He says "I love you" and gives hugs, kisses and massages much more than I do! I need to work on that!

* He loves our kids! I will often see him out of the blue say, "Tommy, how ya doing buddy, come give dad a hug!" Kyla came running into our room this morning and said "daddy!" Barry said, "Oh, what a ray of sunshine!" He is SOOOO super excited about our newest addition Macy. Every night after work he goes up to the hospital and holds her!

He hasn't shed a single tear over this hurdle with Macy's health... he says he just knows everything is going to be okay. Though on Friday when I called him from the hospital in tears because of how horrible Macy was doing... Barry said, "Do I need to come down there and break a few heads? They better be taking care of my girl!"

He's our ROCK! and we love him so much :)

I'm due today!!!

Yep, today is my official due date to have the "baby boy" that I was SURE I was having!

Boy was I wrong! But this little girl has melted all of our hearts!!!

As tired of the hospital as we are, we can't get enough of Macy!!

A friend called today and said, "How are you?" I said, "Fine" then she said... "Maybe I shouldn't ask, then you don't have to lie!"

haha, I like that! Because really what am I supposed to say? I'm great! Things are fabulous!

They will be... but not right now! :)

Actually, I am starting to feel a little bit of life seeping back into my system!

So that is a start!

Short and to the point...

The surgeon team came up to see Macy last night. After looking at her they put her on NG suction (pulling everything out of her stomach) and they put in a rectal tube (to pull everything out the bottom!)

Barry went there last night to give her a blessing and he said she seemed much more comfortable.

Her doctor and surgeon went out of town for the long weekend, so here's to all going well till they get back!

Sweet Relief!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

If you are confused... read my previous post before this one!

I finally got ahold of the surgeon... he came to see Macy. As soon as he walked in the flood gates opened! I explained my concerns, asked him how much she needed to gain etc... I showed him her HUGE tummy and he saw how fussy she was.

He decided to keep her here until surgery, slow down her feeds to 50 ml. and put her back on TPN (IV nutrition). He said as long as she is gaining a little each day, that is okay for now. (few... I am feeling a bit better already!)

Then 1:30 comes rolling around and Macy starts puking bowel contents (again). This is hard for me to watch!!! I called the nurse in and told her that I wasn't going to allow them to feed her at 2:00. She obviously couldn't handle what was in there already! They agreed and also called the doctor to come see her.

Well, she threw up again just before the doctor came. As soon as the doctor saw that it was bowel contents (poop), she said... okay this isn't good! (I immediately started crying... again... and said, "that is what I have been trying to say, since yesterday!!") So, they have made her NPO (so no more feeds for now) they are sending her for an Abdominal X-ray and starting her TPN again.

This is sweet relief!!! Macy girl, your momma is watching out for you!!! We just want you to get through this and come home healthy!!!

Stuffed

Macy is not handling 60 ml per feed well at all...

I feel like they are stuffing her like a turkey every 3 hours.

She absolutely wont take any by mouth now, so it is all going down her tube.

Then she's puking and bareing down and her tummy is so big!

I hate this, I'm going to lose it!

What to I do when she can't handle that much food, but she isn't growing enough?

I'm so frustrated!

I may look strong as stone on the outside, but don't blow on me cause I will crumble like dust!!!

Plan "B"

I have decided that I am confusing my sweet baby Macy!!

It is VITAL right now that she gain weight and get ready for surgery!

So... I am holding off on breast feeding (for her sake and mine).

For now, and until surgery is done and she is home and comfy cozy, she will enjoy my sweet delicious breast milk through a bottle (no harm done).

Than when she is comfortable and home, we will start breast feeding.

In a stress free, relaxing and loving environment... with my friend Lara who is a Lactation Specialist!

Ahhh, breathing a sigh of relief!

On a side note...

Tommy flew to Texas today to spend the weekend with his dad. I hope he has a great time and gets a break from this craziness for a few days! We will miss you though buddy!

Kyla "SCREAMED" the entire way home from the hospital ( she is so tired and out of her routine)! So, when we got home, I took her straight upstairs, stripped her down to her diaper, massaged her legs, feet, back and face with baby lotion. I told her I loved her a billion times! She said, "Night Night Daddy's bed." I gave her a pacifier and lied her on my soft bed with the new clean pottery barn sheets and she rolled right over, closed her eyes and started rubbing her ears!

We're going to be okay!!! No, wait... we are going to be GREAT!!!

Dissed and Dismissed!!

I'm smiling on the outside and saying I'm fine, we're good and Macy is doing well (which is true)... I am crying on the inside and my heart is breaking!

To say that my attempt at breast feeding today was frustrating would be an understatement!!!

A mix of sleepiness, floppiness, tongue in the way, being used to a bottle, overactive milk let down and in the end wet covered in breast milk and mad baby!

I know tomorrow is another day and the sun will shine... but, it is hard to see the end of this tunnel!

and as for today, I feel rejected by my daughter!

Update...

So Macy's surgery has been booked for the 19th of Feb. She will come home before that only if she starts gaining weight. Today she is 3.1 Kg. They want her to be eating 60 ml per feeding and right now she is at 40 ml. So it is looking like she will probably be there until the end of the month. :( She will have to stay for a week after her surgery.

She is actually doing quite well. She breast fed for 5 minutes today - I was so proud of her! They took her off her oxygen and she is only getting IV nutrition for 13 hrs per day. So, in the evening we get to hold her without all the extra tubes!

I am feeling pretty stinkin good physically. I feel like I could go for a jog - yet I wont because I know that my body is still healing internally. But, I may pull out my pilates video after the kids are in bed.

Mentally... I am lacking though! It is so draining to drive across town every day and sit in the BORING hospital. One day I leave the kids with someone then feel guilty about it all day so the next day I take them with me (which ends up worse because they are bored and whiney and Kyla throws fits like I have never seen before!) Today I got home from the hospital at 5 pm. Kyla said, "night night" and went straight to bed. Tommy started begging me to play a game with him and then proceded to bounce off the walls and run around, squeal and ignore my multiple attempt to get him to stop!!!

My bandaide for this emotinal wound is... Way too much of this...

I have never been an emotional eater before... in fact I have probably been more of an emotional starver in the past... Not this time!

With all that said... I am completely overwhelmed by the amount of LOVE my family is feeling and receiving!! So many have been helpful! I came home tonight to 2 frozen dinners, 1 hot dinner, fresh bread, 2 bags full of cookies, a pan of squares, a gift for each of my 3 kids, sweet bread, muffins, salad... Wowzers! And that was just tonight. I have received so much from others already! I do not deserve all this, but I will accept it because it lightens my load! THANK YOU!!!
2010 will be a year where I TRY and pay it forward!!!

Many ask what we need or what they can do... We just need our Macy girl to be home with us! We love her, she is the sweetest wrinkled foot, bunny soft hair, milk breath baby ever!!! WE LOVE HER!!!

Wow!

Found this blog today!

Now, this is strength!!!

She has 3 Children. 1 with down syndrome, 1 with autism who just finished treatment for cancer and a young son as well. Now she is in the process of adopting a sweet little girl with down syndrome!

People like this amaze me and give me so much to be excited for!

This Place...

Is getting really old!

I am ready to have my sweet girl home!

It is so hard to leave her at the hospital (on the other side of town) all alone in her room all night.


I know the nurses are good, but they aren't her family!


When I am there I miss Tommy and Kyla and when I am home I miss her!


She is doing great with her feedings though. She is up to 30 ml per feeding now and 40 ml tomorrow!


If she keeps this up... Than our lives can get back to normal and Tommy and Kyla can enjoy their new baby sister!

There is a light at the end of the tunnel!

~ Happy Birthday ~

Happy Birthday to my sweet "little" Kyla!

You turned 2 today!!!

I am sorry that the highlights of your special day were... a crave cupcake and a chance to hold your baby sister! But I promise a party with all your little friends when Macy gets home!

I looked through many poems online for you, but none of them fully express my love for you! You make my heart smile every single day! You are the apple of your daddy's eye. Your brother Tommy thanks Heavenly Father for you each and every day! You are a joy to our family and we love you more than words can say!!!

Diagnosis...

We finally got the blood work back that tells us what we already know...

She has Trisomy 21 - the most common form of Down Syndrome

Also... barry sold my car yesterday (add that to the list of things going on right now!)

When Macy is well enough barry will fly to california to buy a van for us and drive it home, for now we are borrowing grandpa's truck, so we still have two vehicles!

Macy's bottle feedings are going really well,

*I think it is because my breast milk tastes SOOO good to her :)*

Now we just need to make sure she is pooping too, then she can come home and wait for surgery!

The Doctors...

This is a great look for her!

It was so good that I was at the hospital all day today. I met with ALL of her doctors.

Genetic Doctor - Came to tell me that tomorrow they will have the results on what type of Down Syndrome she has and answer more questions.

Primary Care Doctor - He is the one bringing all the doctors together and always spends a lot of time explaining things to me and listening to my opinion.

Hematology Doctor - He is monitoring her blood work. She is having some elevated white blood cells and decreased platelets. So they have to watch for that to correct itself. If not, they may do a bone marrow aspiration. They also had blood taken from me today to check it against Macy's.

GI Doctor - He is dealing with her Colon. Yes, it is confirmed that she has Hirschsprung Disease (which means the last part of her colon is missing the nerves which cause it to push out poop), so she will need to have that section removed. But he wants her to start eating to gain weight and we will be giving her 2 enema's a day to help her get rid of her poop. She pooped about 6 times today... on her own! It was so exciting!

Resident - Is monitoring her biliruben levels and decided to put her under a light for the night. She has a little bit or jaundice (yellow tint to skin) which is quite common in all babies. Especially when they are born early and their liver is fully functioning yet. It is an easy and quick thing to fix. Here is a picture of her under the light, getting a tan and chillin like a rock star!

So things are looking up! I am so excited to watch her eat! I got to hold her today quite a bit. She had her tube removed from her mouth so that is GREAT! I hope she can handle these feeds so I can try and breast feed her!!! Thanks for all your prayers everyone! They are being answered!!

Don't laugh at my expression... I was watching jeopardy!

This is why I can SMILE through this hard time!

Thanks!

Today has been a good day! I was able to get my friends to watch my two other angels so I could spend all day alone with Macy. Here are a few of my thanks today...

1. First and foremost - I really and truly have the most amazing friends that will do ANYTHING for me! Plus, my kids are just as happy at their house as they are at home. I trust them completely!!! I would not be dealing with all this very well if it weren't for a few very special girls in my life! (you KNOW who you are!)

2. The amazing amount of people who care!!! I do realize that everyone is still dealing with their own lives and problems... Your words bring tears to my eyes. From the bottom of my heart. THANK YOU!

3. I am so thankful I am a nurse and that I can sit with the doctor (like I did today for 20 min) and get full details about what's going on with Macy and understand what they are talking about!

4. I am so greatful that I don't feel like I just had a baby. I did not tear, got no stitches and have an amazing amount of energy! I think Heavenly Father knew that I was going to need the strength to deal with everything!

5. My kids are being so patient and sweet about everything thats going on!

6. My husband... WOW, he hasn't shed a single tear! Where is this strength coming from??? HE ROCKS!!! (Canada Revenue Agency called yesterday to talk about a problem with my maternity benefits. Barry called her and said flat out... My wife cannot deal with this right now, you are going to have to talk to me. She is very stressed out and is only thinking about the kids right now! He got it all figured out for me!)

7. I am so thankful that Macy is doing relatively well! She actually pooped today! :) I have never been more excited to see baby poop before! We are still not even close coming home - the doctor says at least two weeks probably more... But, she is stable!!

Introducing...

Macy Sharon Ehlert

She was born at 9:19 Am on Fri, Jan 29th.

6 lbs 13 oz and about 19 inches

I always knew I was a "mother of angels!"

I arrived at the hospital around 11 Pm on the 28th. They admitted me to a room at about 3. Broke my water at 5. At 7 I was dilated to a 4. By 9 I was a 10 and by 9:10 I started pushing. She didn't make me work too hard... only ten minutes. My epidural was great, I could feel a lot with very little pain. She actually came out on her own at the end. They told me to stop pushing so the doctor could get some gloves on. I said, "well, the baby is coming out on it's own so you better hurry!"

I was so sure it was going to be a boy, so I bent forward to see. To my utter surprise... She's a girl! I looked right at Barry and said, "Holy Cow, you were right all along!"

They proceeded to place her on my chest. Immediately I knew she had Down Syndrome. I will not lie... in that moment, I was filled with a sense of doom. Just a week before I had been talking to my friend who had a Down Syndrome son about how special I think he is and that I think I could handle having a child like that. I was being sincere! But, you can imagine that in that first moment, I was wondering

First, if I was seeing something that wasn't there.

Second, that our Heavenly Father sure has a way of doing things...

None of the staff said anything to us and after they left the room, I told Barry that I was 90% sure our daughter had Down Syndrome. We proceeded to start telling the staff and they called in a Pediatrician and the Genetics Doctors from Childrens to come and see her. After seeing her, before any blood tests, they said they were fairly sure she had it. I proceeded to cry. It is one thing to THINK something, but a whole different one to be told... YEP, YOU ARE RIGHT! But, I only needed about 5 minute to let it out, then I proceeded to ask the Genetic Doctor a million questions about what to expect, what medical problems to look for, life expectancy, and more!

Once they left, I started to deal with this like I did any other child. She needed her momma!! Cuddling, loving, feeding etc. I quickly fell madly in love with her and saw this as a very positive thing in my life! She is truly a GIFT sent from Heavenly Father to bless our family!

Well it didn't take long before they started taking her away from me for blood tests, Echo's on her heart and more. Put it this way, by about 5 PM, I was feeling a little "Down" myself! I needed my girl! I missed her, I wanted to put her on my chest and feel her soft warm skin!

Day two started bright and early with the NICU staff coming to take her and admit her there. So... here we go again! She was having problems with elimination, and still wasn't nursing. I was feeding her through a syringe! Well, by the next day they decided to send her to the Childrens hospital because her tummy X-ray was not promising.

That red spot on her head was where they attempted an IV (after a few of these and two IV's going bad and causing her limbs to swell... I said "NO MORE! Please put in a PICC (a more permanent line that is stable long term!)" They did!!! HALLELUJAH!

So now, she is at Childrens, she is doing great... considering! They have her on TPN (Nutrition) through her PICC, antibiotics, and are doing lots of poking and prodding! We are waiting for word on what comes next and look forward to the day when I can stop pumping and start nursing! But, I will pump as long as I have to! I WILL NOT GIVE UP ON HER :)

We are so crazy in love with her! I have never been so greedy with my babies before. But I feel like I haven't had enough time with her. My heart strings are pulled in many directions. I need to be by her side, but my other kids need me too! We just need her well so she can come home! We want to show her off!!!

She is allowed visitors and we would love you to come. But, check with us first because we want you to be able to hold her and enjoy her when you go. If there are too many people, you will feel rushed :) She needs all the LOVE she can get!

I am so sorry!!!

I know you are all anticipating for informatin and pictures. I was going to post info, but there is SO MUCH TO SAY!!! So much to be thankful for!

I just can't seem to find the time right now between pumping milk, driving across town, loving my other two kids, talking with doctors, cleaning the house for showings (yes we are still selling), and all the other things that are a normal part of life!

So, I promise there is pictures to come and more info. But for now...

She is having lots of tests, antibiotics, nutrition through her IV and we will know more in a few days. She will most likely need surgery to take out a section of her colon.

My most favorite thing to do is hold her chubby cheek to my cheek and feel her soft skin!

Though life is crazy and I may look like a bomb ready to explode at any minute (ask Nancy Leavitt) - we are doing good. We are happy. Kids are handling everything pretty great and we KNOW that she was meant to be in our family just the way she is!!! PERFECT!