I will never stop...

I never stop thinking about you my little sweet pea. Mommy and daddy loves you very much. I will never forget the first time I saw you, the first time I touched you, the first time I saw your eyes open, the first time I changed your diaper and the first time I held you close to my skin. And I will not forget how peaceful you looked the day you passed on to a better place. Our love was short but greater than any love could ever be. Rest now my little one. Watch over you big brother and keep him safe.

Hardest night ever

Last night was my hardest night ever. I woke up many times grabbing my phone to call the NICU to check on her. I had to remind my self each time. I slept with her purple blanket by my face last night. All my emotions are running wild. To many things to think about and to many things that need to be done.

She lives forever...

Caleb met his little sister today. He didn't know what to think about her. Her poked her arm and then her face. When she moved he jerked his hand back. Then he kissed her on her forehead. Emily was having a muscle spasm and Caleb thought she was waving to him. He waved back at her. It was the sweetest thing ever!

This afternoon, Emily Rae-Ann passes away peacefully in mommy and daddy's arms. She lives forever! May she be in peace and watch over us.

We love you Emily. You will forever be missed but always thought of!

so loved...

Emily's blood gases aren't very good. And her oxygen levels are very stable. Her belly is still very uncomfortable for her. The suction tube isn't getting any of the contrast out of her belly. It's stuck. :( She is has started to retained fluids again... I don't think we have had a step forward in a while. It's been many steps backwards....

Blah....

Whelp... contrast study pretty much showed us what is wrong with her belly. (What the doctor pretty much already knew). Her bowls are blocked. The contrast that they put down really put some stress on her body. Today they had to go up 2 on her pip. :( Her oxygen levels were a lot higher today because of how her belly felt. That contrast to sat in her belly. It should of moved out of her belly by the end of last night. Just show how sick she really is. They had to put the suction tube back in her belly to get the contrast out because it's not coming out the bottom. She was more unstable today than she has ever been. What a ruff day for her. hey have been checking her blood gas ever 4 hours today because of her blood gas being so bad.

When I came in they had made her a bracelet. It had her name and a lady bug on it. SOOOOO cute! They are so good to her. They have been so wonderful. Tonight I played dress up. We found the cutest shirt! It said... "so loved" I held her for the first time wrapped up like a baby instead of kangaroo. :) I even gave her lots of kisses! It was nice to be able to see her face and to look at her face with out the suction tube in her mouth. She's so big now. Even though she only gained 1lbs 2oz she's soooo big. She's a different baby.

WE LOVE YOU EMILY! Sleep tight... Don't let the bed bugs bite.

Could it be?

Today Emily pooped 2 times. We dont' know what that means. But she did it. The sergeons want her to poop a few more times before we try anything else becuase there are so many things that this could be.

She's up to 1070 grams today. Her OFC stayed the same. And she's jsut hanging out.

I held her again today. I love my little girl.

One day...

One day I will wake up and this will all be a dream.

So hard to watch...

I watched the little boy Owen come off the Jet ventilator today and go on to the conventional one. My poor little Emily is on the Jet. They don't see her coming off it any time soon. Owen was born at 24 weeks and was a twin. His twin didn't make it, and he's doing good. How ever there was only 1 little Emily and she's doing worse then he.

She's up to 1012grams! :) Her penrose came out all the way today. Her belly looks bigger. And more dusky.

I held her today. She is so STINKY! She's 6 weeks old and hasn't had a bath yet.

another day

Emily's belly is still the same. No better and no worse. They are still backing out her penrose each day. Nothing coming out of that. She is 6 weeks old and still can't eat. BUT the good news is she is gaining... gaining... gaining.. today she was up to 990grams! 2lbs 3ozs. Wow! She was just 1lb 5ozs when she was born. Her head has also started to grow. She was born at 21cm and now up to 23.1cm today. 7 days ago she was still 21cm. She must of finally hit a growth spurt. If we could just feed her some milk. Her vent settings are still the same.

I held her agian today. She did pretty good! She loves being with her momma.

Busy few days

Haven't had much time to blog between Caleb, Emily, working a few hours each day to getting yard sale ready and having it.

Miss Emily has had a great few stable days. Her belly is still really big (not good). She had the suction removed tuesday and her belly swelled wednesday. Nothing is moving around and still no dirty diapers. The doctor is very worried that it will never work. And that if we wanted to do the surgery that they would find what they are worried about, that her bowle is completely dead or most of it would be. And the fact that she might not survive the surgery. But her lungs, heart rate and blood pressures the same. Her penrose still gets back out a little each day. Nothing came out of it tonight.

She's up to 2lbs 1oz tonight! :) My little fatty! :) You could see her little but cheeks!

I held her again tonight. I love holding her. A good friend of mine got some really good pictures of me holding her tonight. Her "outfit" for the day. Cute lady bugs, black and red blankets. With the CUTEST Lady Bug hat.

Yard sale went really good. We will be doing it agian next Thrusday and Friday. Alot of good things still left. We had so many wonderful friends and family donate for her. We are so very thankful!

Some day soon

When I went to see Emily today her belly was a lot bigger. They just stopped the suction tube yesterday! They did and x-ray this morning and nothing seem alarming at the time. This afternoon when I was about to leave to get Caleb they asked me to take her temp before I leave. So i did. It was 1 degree lower than it should be. We checked it on the other arm, yep, the SAME. When we flipped her over her belly looked MUCH bigger than when I first got there. Each time the nurse touched her belly she pulled her arms and legs in and squinted in pain. We took her temp one more time. It was a little better but not much.

The doctors told me they were gonna give her a little longer off suction and re-check tomorrow. It was so hard to leave her tonight, but I had to get home to Caleb.

Please send an extra prayer to her tonight.

Found more support...

Tonight I sat down and found some good support groups. I can't wait to talk to some of the other families.

She's had a pretty good day. Pretty stable. For now laying in bed thinking of my little girl! And how much we love her. Like my aunt always said "To the moon and back!"

What beautiful face!

Today when I wen to see her she had a lot of things done. Poor girl it wore her all out! The re-taped her tube. The FIRST time I saw her with out all that tape on her pretty little face. She looks so different. The process of re-tapeing is more than I thought, it took a while. She did so well! She didn't brady at all and was only on 32% oxygen. Then I picked her up by myself and held her in my hands while they changed her bed. Then I changed her diaper, took her temp, change the biox thingy, and changed her penrose gauze. She did really well with that. Then after she finally settled down x-ray came to get a x-ray of her chest to make sure the tube was in the right spot. After that she settled down and the person came up to re-dress her dressing on her central line. Poor girl! Surgery came up to look at her and they are still concerned with her gut. They took the suction tube out that goes to her belly and replaced with a g-tube. In a few days if everything still looks about they same they will do a contrast study, where they take x-ray over and over  as it moves through her belly. They do this to see if it's moving and if it isn't where about did it stop. That's all that will tell. It will say "hey she's ready to start feeds again" or "hey she's not ready for them" They also are backing out the penrose each day little by little.

But she did really well after that!

Once that was done we just spent time together. She held on to my finger tight for a long time. She's such a good girl when mommas around! ;)

<3

Lots of love today

Tonight when we visited her she was getting some blood. She was very active. She has been around 25-40% oxygen today. She's been a good girl. She had lots of visitors today. She got to meet her Aunts and Uncles!

When will this end?

The emotions... The anger... The heart break... The sadness... The overwhelming sense of feeling guilty.... Guilty that I did something wrong... what if... I could of stoped it... what if... I didn't carry Caleb to and from the car... what if... I wouldn't of worked out in the yard that weekend... What if... I didn't bug the doctors to get up and go to the bathroom... what if... I would of just stayed in bed upside down.

What IF!

The greatest feeling...

A mothers touch...

Emily has had a good night tonight. I held her for 2 hours. Her skin to my skin. She did really well. She only had 1 brady only because We had to push her tube back in a few cm because it was coming out. She held her temp really well. The emotions running through my head. I head my baby for the first time since she was born 5 weeks ago! 5 weeks... it's was so hard to walk in everyday and see these other families bathe, feed, change diapers, take temps and hold their babys. I eventually was able to change her diaper and take her temp. And tonight was even better then when I got to change change her diaper and hold her up while they changed her bed. I held her right up aganist me today.

She weighed 1lb 13oz today. When we left she did really well. She has been sleeping and one 40% oxygen and now bradys or desats. She's happy now because she heard my heart beat for the first time in 5 weeks.

Tonight's the night

Tonight Josh and I will get to hold our little princess.

EEG results and more

(Emily June 10 at night time, she has her days and nights mixed up)

Emily had an EEG done on Wednesday. We got the results back Thursday, but its been to hard to write about it. The EEG results showed that Emily has suffered from moderate-to-severe Neonatal Encephalopathy. This is cause by the lack of oxygen-blood flow to her brain at birth. Emily had a ruff start breathing for a few hours after birth... which has lead to this problems.

She also still has her belly issues, Necrotizing enterocolitis (NEC). We have chosen not to have surgery on her belly. The outcome of the surgery isn't good. The surgeons and doctors both agree that Emily is at high risk for not surving the surgery. Josh and I don't want to put her though the surgery. She has over come a lot over the last 5 weeks. We now leave it into Gods hands that he will take care of her, make her whole and strong.

She came off her antibiotics Friday. Monday if all is okay she will be challenged to use her belly. Whether that mean she start feeds up again (very small amount 1 drop every 4-6 hours... 1ml.) or try a study to watch her intestines. Emily hasn't pooped since the last time I posted about her poopy diaper that I changed.

Emily, momma and dada love you very much. You are a strong girl.

Still waiting...

Emily had an EEG done yesterday. Still waiting on results. I didn't know they were doing it until I walked in and saw her getting the test done. They talked about waiting until she got off the High Jet Ventilator because the rate that she gets her breaths (very fast, fast than you or I can breath in a second) would mess up the signals. But they went ahead and did it.

Her gut still looks about the same. Not as dark but hard and swollen as it has been. The surgeons came up to see her today and they are still very concerned with her gut. She comes off antibiotics on Monday I hear. We will no more if she has anything going on. She still drains a little bowl from the penrose drain. Which isn't great.

All this rambling on every day and I forget to thank god forgiving us this pretty little girl. I can't say how much her support team at Riley has been so good to her. Including US!

1 step back...

Just seems like it was only a matter of time before she took a step back. When I called to check on her this morning she is starting to puff up. The good thing was she was still peeing. The doctors haven't rounded on her when I had called so I am not sure if they are worried or not. Going to be heading up there soon.

2 steps forward....

(Date taken June 6)

Emily Rae-Ann Throop

It's hard to believe tomorrow she will be 1 month old! She's so strong. Every night i go to sleep i think "we've made it through 1 more day..."

Here belly isn't looking as dark as it did last week when the penrose was placed. It's still swollen and hard. Her penrose isn't draining that much. Just a little. She will be coming off antibiotics the end of this week. They might try a study with her that they can watch to see how her bowl is working. And then might try to start feeding her again. If the study looks okay.

Everything else is looking GREAT! Her blood pressures, blood gas/ventilator settings., and urine output.

The unknown...

Emily has been stable the last few days. Nothing has changed. She still has been having a  few seizures, we just don't know very much about her brain. Her belly still is dark in color and very swollen and hard. But everything else is great! Her blood pressure, her urine output, her lungs/ventilator settings and oxygen levels and her tolerant to her penrose and central line.

She loves to hold on on the very bottom of the rope from a very high cliff. That's my girl!

Crazy few days...

What a crazy few days it's been. Josh and I visited her Friday after taking Caleb to the Zoo for his 1st birthday! Talked to the Doctor... They change of 3 weeks. So Monday she is getting a new one.

Saturday night I visited her in the morning before Caleb's party and after. She had a central line put in. They made a small cut by her neck and pulled it down the vein and out of her chest. She did really well during it. They almost thought they weren't going to be able to get it and then it worked. :) Thank goodness! She had a few seizures last night when i visited her. I saw them and nurse talked to the doctors and decided that it was time to check her medication level that suppresses the seizures. When they checked it it had drifted down a little lower than what Emily liked it. So the doctors gave her a little more. She hasn't had any more. :)

Caleb has 1 year pictures today and then I will go see her!

Poop?! Who wants to change poop? ME!!

Emily pooped today. I got to change her diaper. I thought it was her first one but I guess she pooped yesterday too! So that's good news.

Her belly is still expanding. But her cultures are coming back negative! So that's good. Hopefully her body is repairing itself. Because shes not strong enough and her skin isn't well enough to under go the surgery.

She only had a few bradys today. They re taped her breathing tube. Her right lung was sticking together (collapsed) After they re taped it expanded! :)

Her picc line came out last night. (she hates tubes! lol) So they tried putting in another one today. But weren't successful so they are letting her rest and will try tomorrow.

REALLY!?

This morning when I checked on her she has had 20 bradycardia over the night. Her blood gas wasn't good. So they made some more adjustments on her vent. And since they did that about 430am it slowed them down and she only had about 3. She responds really well to the manual breaths and just getting her oxygen turned up. Then once shes okay she weans back down to a lower oxygen level.

Will know more when I go up to the hospital today.

Her brain makes me worry...

She has had lost of seizures. Because she is so little and on a jet ventilator they can't do and EEG or a MRI. I just wish she would hurry up and grow she we can get some answers.

We talked about her brain and when we will start seeing signs of cerebral palsy. That is something that will develop over time. TIME! We can't handle time. We want to know now. We understand she is at HIGH RISK... but we need to know more NOW!

One day she'll get home...

Emily day didn't start off to a great start. Her blood gas wasn't the greatest. They had to go up on vent settings but the doctor said that was very miner changes. Her oxygen level was on the low side today she was only on 25%. So that's great! :) Her urine output is good. She got a blood transfusion today. She was starting to look puny. So she plumped right up afterwards. I don't know if they know how much she really weighs because today they told me she was still 1lb 7oz. So who knows! Blood pressures are great! They won't try to feed her until the penrose comes out and she shows better signs of her belly. So as early as 1 week but at least 2 weeks or more. They really want her to start gaining more weight. At least 10 grams a day would like to see 20 grams a day but really should be gaining 30 grams a day. That's what she would be doing inside me. But for some reason she's not able to do it. Her body isn't tolerating the fat very well. They give her a mixture through her IV. It's like her body is saying she doesn't need anymore. She doesn't act as sick as she is. She moves around a lot!

Her belly was starting to look just a LITTLE bit better. But today it got a little fuller looking. So they took xrays just to make sure she didn't tear again. But it doesn't look any different. She did have a pocket of gas which is a good thing.

Tonight when I checked on her her picc line came out part way. It wasn't in her shoulder anymore so they took it the rest of the way out. They are using her IV from her blood today. And in a few days they will give her another picc line. She sure hates all the tubes and stuff. :) She pulls a lot of them out a lot . :)

A lot of people ask when will she get to come home. She has to stay until at least her due date. August 26, but then it just depends on if she is healthy enough to come home.