How can I get past this day...

August 26th was going to be such a great day! The day we bring our baby girl into the world. Well now all I can do is hope this day passes by fast. Each time I think about it I start to cry. I tell myself,"You can get over this. It's jut another day." But the day creeps closer and closer. 

I miss her. These last 4 months have gone by to fast. I feel horrible because I have been working working working and taking care of Caleb. I haven't had much time to sit and really think about her.

Day by day...

Each second gets better, each minute gets better, each hour gets better, each day gets better, each week gets better, and each month gets better. I go though these pictures of our last moments together and I cry. I cry for joy that we were with her. That she met her brother and that she wasn't by herself. I know now she's in a better place. And I keep thinking why couldn't we just have one more day??

I thank God for all the RT's, Nurses, and Doctor that helped take care of her. They we her care taker BUT they have found a spot in our hearts as part of our family. With out them I would have had no time with her. So agian, I thank God for all of them.

For tonight I hope tight to her teddy and blanket and fall fast asleep as I dream of the next time I will see her.

We love you baby girl!

XoxO

Never ending feeling....

I miss my little Emily.

I ran into a mother (I think I have posted about her before on here) that was at the Riley NICU during Emily's stay. She had twin boys. One pasted away before Emily did. When I saw her today on my lunch break she told me her other little one past away a few days after Emily.

We exchanged numbers. I hope we can get together and talk.

I wish the best for them....

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.

Miss Emily 3 weeks 3 days-- May 31st

She was very active today. :) Eyes open wide. Moving arms and legs. I got a good look at her skin and it looks better. Her back is still healing (that will take time due to being on it a lot), and on each side of belly (it split open from her belly expanding so its looks kinda bad). Other than those areas her skin looks great!

I asked the doctor today if she is progressing... I couldn't get a straight answer. Her belly has set her back. Since all of this happened she can't eat for a while. Not until she gets the penrose out and the okay from surgeons. Her lungs are doing great the doctor said. Her skin is getting better each week. They are worried about her seizures since she really has no evidence of a brain bleed. They order another ultrasound of her head for when she is 1 month of age. They will be looking at her brain matter. And now let's hope her belly gets better soon! So she can eat and gain some weight!

She weighs 1.45lbs and has a OFC of 21cm. :) Our little peanut. Her length hasn't been recorded since birth which was 11 3/4in.

Thank yo for all your thoughts and prayers!

Eyes open WIDE!

We went to see Emily today. She was having a good stable day. When we got there her eyes were WIDE open. :) She looks so cute with her eyes open. No major changes. But she is stable after surgery and its been 3 days. Thats good!

The nurse keep saying how much of a fighter she is! And has been from the begining!

<3 Our little Emily! We love you!

1 step forward, 2 steps back....

Emily had been doing very well. Until Friday. Emily had to have surgery to place a Penrose drain into her abdomen to drain fluid and BM. They did this because she has Necrotizing enterocolitis. http://preemies.about.com/od/preemiehealthproblems/f/nec.htm

Right now she is doing very well after her surgery to put penrose in. It's been 48 hours since the surgery. The doctor said if shes not responding to penrose or antibiotics, she would have a few hours to a few days before she goes down hill. But no longer then a week. You need your small intestines to survive. Her blood pressure would drop, she would stop peeing, her blood gases would spike and her heart rate and oxygen levels would go down. Right now she is doing well in all these areas! ;) most of the time baby's have to go on medication to hold blood pressure up after surgery ( like what she was on at the beginning when her blood pressures weren't good). She's not on anything other than antibiotics! So that's good.

She is resting well and her belly seems to be softer the nurses and surgeons say. She looks better.

A down day...

Today not such a good day. Emily had to have surgery. Her belly kept getting bigger and bigger. From 8am until 12pm it was a big difference. At 4pm they had surgeons come look at her. They said that she needed to be drained. They call me and tell me. I consented to the surgery thinking it will be later on this afternoon  when josh gets home so i can go up there. NOPE! They had to do it right then and there.

She had a bunch of poop and fluid in her belly. They drained A LOT! She has a pref in her bowel. This is something that will close up over time or she might need surgery (but not until she gets a lot  bigger and older). Her belly looks a lot better. All this extra stuff in there was straining her lungs.

She is doing much better now. She's not in any pain. She was resting comfortable when we went to see her. They tube will stay in until it stops draining.

Ultrasound of belly

Emily has started feeds and stopped feeds, started feeds and stopped them. This is very common in premature babies. They are only giving her 1ml every 6 hours to help stimulate her bowel.

She had an ultra sound today. It showed some fluid in abandoned. Which isn't uncommon with being on ventilator and as sick as she was at delivery. All together they didn't see anything that made them concerned! So that was good. They just are keeping an eye on her belly. Bowel shifted to one side.

Tonight they are letting her rest. She got blood today and her blood gases have been great. Blood pressure is still good. And no signs of seizures. Her skin looks great in most spots but her back and sides of belly still look bad. She did how ever pull her breathing tube out. She is feisty! Haha... She doesn't like to be messed with a lot. So she gets very mad and starts pulling on tubes. She pulls the feeding tube out a lot. Her skin is so gooey that nothing really sticks to her. They had to re-intubate her today. Scary! But she is fine.

POOPY DANCE!

Emily was able to rest last  night. No heal pricks no nothing! :) When I called to check on her this morning the nurse said they did the poopy dance because she had a little smear in her diapers. Wasn't much but was enough to do the poopy dance! lol Feedings are still DC. Hopefully she can get all that poop out so we can start feeding her again. Going to see her this afternoon. Started cleaning carpet... but that is hard work. No wonder people call someone else to do it.

When can we stop worrying?

Today we got the results back on her head ultrasound. They good and not bad. But could of been better. It showed a slight change from the last 2. They keep telling us that brain bleeds are very common at this age. And that if it stays in a grade 1 or 2 it's not to much to worry about. It's the grade 3 and 4 that you have to worry about. Her ultrasound showed what they "think" "might" be bleeding but can't really tell. Which we knew this from the other 2 ultrasounds. So that wasn't bad news. But they have suspension of PVL (long term brain damage) but not for sure and they don't know what type or to what extent. But it shows a sign that her brain did go with out oxygen and blood at one point. The NNP said that she had brain matter. And that's good. We won't know to much more until she can get a EEG and MRI. They came up to see her for a EEG and they said until she gets off the high frequency ventilator she can't have one. It would mess with the test. The MRI she needs to get bigger and older.

They stopped her feedings yesterday because she needed blood and platelets. This morning they were a little concerned with her belly getting bigger and a little dark. They did a x-ray of her belly and didn't see any gas moving around. Which is to be excepted because she hasn't pooped yet. They weren't sure about starting her feedings up again, but they did. She gets 1ml every 6 hours instead of every 4hrs. after her first feeding today at 2pm I checked on her to see how it went. When they suctioned her belly to see if she digested it it was a little green, but the doctors weren't concerned and they are going to give her another feeding tonight at 8pm. 

She had a better day with breathing. She came down by 4 on her settings over last night. and she was around 37-42% on her oxygen today.

Her blood pressures have been great!

The nurse asked me if I wanted to change her diaper and take her temp. I said sure. I feel like I don't know what I am doing when I touch her. I feel like a new new mom. It feels so good to be able to take care of her!
Her skin looks GREAT on her arms and legs and neck. There are a few spots on her belly, back and groin that look bad still. But they think overall the cream is doing it's job.

Today while I visited her as I was looking at her she started to get very upset. She looked like she was trying cry but couldn't because the tube in her throat. She had so much bubbles and spit in her mouth and she was trying to work it out of her mouth but couldn't. When this happens her oxygen also drops low because her airway is blocked. So I got the nurse. She needed morphine and suctioned. Then she was better. It was scary to see her that upset and I couldn't do anything to help her.

Just checked on her and they stopped her feedings because when they suctioned her at 8 before her next feeding she still had green. Which means shes not ready for feedings.They don't want to push her to fast or hard because they could pop a hole in her intestines. But she still is doing great. Her oxygen level is right around 30%. No test or blood gas until 8am! She gets to rest tonight!!

Emily doesn't like the weekend night shift.. :)

This past weekend Emily wasn't doing so well with her lungs (Dr said still better then 75 % babies her preemie age). At night she would need a lot of setting changes and then during the days should would come back down. Last night was the first night in a while she did ok. The nurse said she did TOO well. They had to come down on her settings by 4.

Her blood pressure is still doing great! She got blood and platelets yesterday. They stopped her feedings for a few days. Her belly is getting big. Not sure what is causing it. they did x-ray and didn't see air moving around but the good thing is there is no holes down there in her belly. They did another head ultra sound yesterday. Will know results today. Also should know results on her blood cultures. If she has a infection or not. The dr said he thinks her skin is well enough on her head to do an EEG. So they came up to look at her to see if they think she is big enough for the test.

Should know lots today!!

Thank you to all our friends and families! You have been such big supporters to us!

2 weeks later and I finally held her!

Tonight was the best night ever! I went to go see Emily tonight. When I got there the nurse asked me if I have got the chance to handle her at all. I said no. She said " Since she is more stable you can now place your hand on her head with a little pressure. This is kinda like skin to skin but with out the holding. You have to stay like this for a while and you can't pat or rub." I was so excited to do this! Then when the night nurse came on she asked me while she was changing her diaper and bed if I wanted to help. I said sure. She said you can pick her up and hold her while I change her bed. I said umm. She said I can pick her up and place her in your hands. I said ok. So she did. And I GOT TO HOLD HER! It was the best moment yet!

She's had a pretty stable day. She over her birth weight now. She weighs 1lb 7ozs. She's so little! They have given her 3 feeding today so far. And so far she's done good. She is only getting 1ml every 4 hrs. Just to start getting her gut ready. Telling it hey time to do your job. It sounds like she might be getting blood tomorrow, which might mean she stops feeding for 24 hrs.

The nurse told me something neat tonight. There is a study out there that talks about when infants hold there hands and arms in the middle of there chest near their face it helps them read better later on. something I didn't know!

Let's hope she is better tonight. For some reason she doesn't care for nights. :)

FOOD!

What a better day she is having. Her blood gasses are coming back good. Her blood pressure is doing good. She back down to 30-35% oxygen.

They started to feed her 1ml of breast milk every 4 hours. They started at 12pm. :) Let the fatting begin!

Who like's nights? :)

Last night Emily had a bad night. But it seemed to be a few things that caused it. 1. Her breathing tube wasn't all the way down, so her blood gasses were coming back BAD. So they turned up all her settings. Things got a little better but not great! They did a chest xray and found out that her tube wasn't down far enough. When they got that fixed her gasses came back better and were able to wean on her settings. 2. She began to have sezuires. So they gave her some medication to stop it. They had stopped giving it to her because her level of medication was so high, and they wanted to wean it back down to a better level. It's taken several days to get to about 50. They think what casued the sezirues last night were from her sadtion medication. So they DC'd that medication and are just giving her morphine. 3. her picc line they did wasn't far enough in. So they had to fix that.

Her diapers are looking great again. She's not peeing out to much! :)

Today she's been doing much better. Blood pressure still great. She was laying on her belly when Josh and I went to see her today.

We love you Emily!

Up, down, up, down...

Emily has been doing so great. She's been off her medication for her blood pressure and keeping a top number blood pressure in the ranges of 48-56. They did a picc line tonight and are taking the umbilical line catheter out.

However, when i called at 8 to check on her the nurse said that her blood gas wasn't the greatest. So they were going to recheck it in 10-15 mins. When I called back to check on it they told me to call back in 10 min. When I called back the nurse said that her blood gas was better but not idea. They went up on her pip by 1. She is on 24 now. She was on about 50% but came down to about 40%. They said that she needed suctioned and that seemed to help that blood gas out. When the doctors were at her bed side to check the blood gas she started to make some strange movements. The nurse had the doctors look. They said she was seizing. She's been off her medication for a few days because the level of that medication was to high in her blood. She was at about 50 this am. They reordered the medication and are starting her back on the medication. The nurse said she was resting and laying still.

Will she ever grow out of these seizures? I don't know if I am going to be able to rest tonight knowing that she could seize at anytime.

I will check on her again about 10:30 to check her blood gas. Hopefully it's much better.

A day together...

I spent almost all day with my little diva. She is still doing good. Off her blood pressure medication all together since early this am. Now that she is off that they are taking the emblical cord catheritier out and doing a pick line. Still waiting to here back about this. Once this is in and she seems to be doing fine they will hopefuly start feeds tomorrow. We will know more tonight. She got a blood transifusion today and that went well.

While I was visiting I got a massage! :) The hospital does it for the mothers on Fridays.

We will know more later.

Another great day

Little Emily! You are so loved! :)

Today is got off 1 of her blood pressure medication! And as of 11pm she is only down to 5 of the other one. Each time it's above 40 they will wean down 2.5 instead of 1. So by tomorrow she will be off of it! :) Which could mean she gets to eat. Hopefully the doctors will let her tomorrow. I just know that will help her out sooooo much! Her's blood gasses are great and oxygen levels are great!

I love to watch her open and close her eyes. :)

She's turned the corner

Emily is doing wonderful still! She is down on 1 of the blood pressure medication from 20 to 18 and the other one from 20 to 8. They are weaning every other one. So every 2 hrs when they check her blood pressure if it still above 40 they wean down by 1 on 1 of the medications and then the next time they will wean from the other one. She's on room air! :) 21% oxygen, what you and I breathe! She did lose a little weight, but she has lost a lot of fluids. She was going to the bathroom a lot so they were replacing what she peed. They have decided not to do that. So she is losing that fluid. She is just under 1.3ozs. They have her on her belly tonight. They said she likes that. The nurse that has her had her last weekend. She she said her skin looks much better. :) (But it's still pretty bad, but it's healing)

I am so glad she's turned the corner! Makes it easier for me to rest.

What a great day

Emily is doing well! I visited her this morning @ 9am. I got to see the doctors round and I got to talk to them. Her blood pressure is still doing so great! they are still weaning the medication for blood pressure. She is down from 20 to 9. Now they are going to wean off the other blood pressure medication. They will do every other time on the 2 medications. If she can get off them blood pressure medication or get low they will start feeding her. They would like to start by the end of the week but they aren't in a rush. Her skin looks bed BUT it's getting better. There is old skin flaking off and new skin looking great under it.

I got to watch both her eyes open up for the first time! It was so wonderful! I would of missed it if Sherry didn't take me down there this morning. Thank you Sherry. She opens them open so wide.

This is a new day

Today was all around a good day. Emily had great blood gasses. Her blood pressure is great! They are weaning her off 1 of her blood pressure medication. They are now checking her blood pressure once every 2 hours. Each time they check it and its above 40 they will wean her down from 20 by 1. And tonight she's already at 12!!! This is so great!

Today the doctors talked about how bad her skin is. They said "the worst they have ever seen in preemies". They had burn unit, plastic surgery and dermatologist come look at her today. They put there heads together and said that instead of using aquaphor to use a combination of creams that have antibacterial cream and nystatin (fugal cream). They will put this on her 3 times a day.

Over all she's doing good. She has differently turned the corner today.

Over all I am tired. Caleb is so moody now. He wants pretty much his daddy all the time. :(

I think she's just trying to scare momma

He blood pressure is what they are most worried about. (as well as her skin but that can get better over time) Emily's blood pressure got down to 30 yesterday (bad under 35). But when we visited her last night it was 39 and 37 and when we left it was 43. When I checked on her this morning it was 46!!! I think she was just trying to scare me that little stinker. :) Her nurse said she had a good night and she's behaving so far today. I like that news!

These ups and downs...

Emily had been doing well yesterday and last night and even till this morning. About 3ish today I got a call from the doctor. At that moment I knew this wasn't good. The doctor said that she had an update on Emily. Her blood pressure isn't responding to the 2 medications that she is on for it. It was low. They like the top number above 35 and it got down to 30. The doctor said her lungs, heart rate and urine output were all stable. They had the burn unit come up and take a look at her skin to see what they recommended for her. They said to put aquaphor 2 times a day and to start an anti fungal medication to counter act in case the aquaphor were to keep something in her cracked areas. They went on to talk to me about her blood pressure. She is maxed out of the amount of dose that she can have each time and that they can't go any higher with it. Her body now needs to take over and start regulating the blood pressure on its own. This blood pressure can do 1 of 2 things-- a. just be a number on the low side and nothing happen or b. continue to stay low or go lower in which her other organs would start to fail. All I could do was cry. Josh was at work and I was alone. I called Josh at work and talked to him about it. He left and came to get me. We went up to visit her. On our way I called to check on her and her blood pressure had started to go up. :) It was 39. When we go there they checked it again it was 37. :) Still good. When we left at 8pm it was 43!!! :-D Josh and I were able to talk to one of the doctors that were there tonight. He said that Emily is in the middle right now. She's not doing great but right now she doesn't seem to be doing horrible seeing that her blood pressure was starting to stabilize. He said at this point it would be hard to predict how she would be on Wednesday. But I will take the middle over the bottom. Josh asked the doctor if the medication phenobarbital could cause low blood pressure. He said yes. She was getting a dose every 12 hrs to stop seizures. She had to have a few extra doses of it the day before yesterday. They only like the level of phenobarbital to be around 20-40. Because she had those 2 extra doses it cause her levels to jump to 109. The doctor said he had no idea how this happened. Seeing that before they gave her the doses they check and it was only 20. It should have never jumped that high. So now she's not getting this medication at all to bring down the level. Which when they checked early it was down to 92.5. So it is coming down. Morphine also can cause low blood pressure. So we are just saying our prayers that we just had a scare today. I continue to call the nurse every few hours to check on her. They are holding off on feeding her until she quits "acting up". I just wish she would calm down so she can get feed. I know it would help her out sooooooo much.

Again, I want to thank each and everyone one who is reaching out to us and praying for our family.

Little Emily this afternoon...

Her blood gas this time was much better. They didn't make any changes this time. They are stopping the seizure medications all together because the level of medication is still high. This scares me so much. They will check her level daily to watch it. But they want the level to come down a lot. Her blood pressure is still little low. They had the burn unit come up to take a look at her skin just to see if there is anything they can recommend. I am waiting to hear back on what they say.  Her output of pee is good! They aren't haven't to give any replacements! Maybe her kidneys are starting to mature now! They are going to hold off on feedings since she is still acting up. Why do I feel so helpless? I am her mother and I can't help her.

Just checked on her.

When I called she had just had a blood gas read, and it wasn't to goo. They went up on the ventilator settings to 25 but down in the weight. She's getting 300 breaths now. She's still on low oxygen. They had to go up on one of her blood pressure medication because her blood pressure started to drop a little again. We were on a good streak. She hadn't had any seizures still. They were holding off on her medication for that because the level of medication in her blood was very high and they wanted to bring it down a little bit.

I can't sleep...

After talking to the doctors yesterday it was very hard to sleep last night. I think I woke up every 2-3 hours and called her nurse. She has had a pretty stable night. I am just glad we had no downs. This would be the first night in a few that she's been stable. Josh is off to work today and Caleb's off to school. Miss Fran is picking Caleb up for me so I can rest today. He doesn't understand why I can't pick him up yet. It makes it very hard and with Josh going to work it's not a good idea for us to be alone.

A talk with the Doctors...

My mom came into town today to visit. She and I went to visit Emily. We also got a chance to sit down and talk with the doctors today. Emily had a better day today. She hasn't had any seizures since last night/early this morning. Her blood pressure is still on the low side even though she is on medication to help keep it right where it needs to be. Her skin is still pretty bad, but looked more dried out today then yesterday. They want it to dry out so the new skin can grow. With the skin dried out and cracked it leaves room for infection. So this is something they are keeping an eye on. She still is peeing out a lot and losing fluid through he cracked skin. They are having a hard time keeping up with the amount she pees out. Although when I checked on her tonight she didn't need extra fluids when they checked her diaper. That was great. Her lungs are doing GREAT. She was on 21% oxygen today for a while and about 30% when I check on her. For those that don't know you and I breath 21%. So it was a great day for her. Her Ventilator setting are great too. They aren't to worried about about her lungs. :) They have a  few things that they think are causing her seizures. 1. Brain bleed-- pretty much ruled out. 2. Lack of oxygen and blood flow to brain at time of birth -- Which means she could have cerebral palsy ( we won't know much of that for a while because they have to do a EEG and she needs to be much older and bigger to fit this test). 3. infection-- this is ruled out. and 4. her output of fluids from her skin and pee as well as low blood pressure. They think she might have a PDA which can cause low blood pressure.

She is critically ill and considered unstable but stable at times. It's hour by hour with her because they have to keep and eye on her blood pressure to keep it up and watch for seizures. The hardest part to hear the doctors say is that she is still high risk for not making it. We just keep praying that everything will be ok and that she will get stronger. On Thursday she was back up to her birth weight 1lb 5 ozs. We might be holding off on feeding her until we can get her blood pressure more stable. They want her lower or off her blood pressure medication before trying this.

With all this being said all we can do is pray that each day she get stronger and healthier.

Faith

My very good friend Amber took me last night to go see Emily. It's so hard to see her like this. She is still having seizures. She got 2 extra doses of meds to keep it under control. And she is still having problems with her blood pressure. They are giving her lots of meds to keep it right where it needs to be. Her kidneys are still really immature, so she pees out everything they give her. So last night they gave her even more then what they have been giving her. She still peed a lot but not everything they gave her. So that was good. She is still doing good on ventilator and oxygen.

I wish I could wake up and her be ok.

Another ruff night...

At 6:30 am this morning we got a phone call updating us on Emily. She had a ruff night. :( She had several more seizures. They counted about 4-5 that they had seen but weren't sure. Her skin is so dry and cracked now that she is bleeding again. They want to give her 24 hrs so this morning some time they will try somthing new with her skin. For the seizures, they were giving her a medcation every 12 hrs for it but they broke through. They have tried a different type of medcation now to stop them. Her blood pressure also is really low. She is now on a medcation for this as well.

What happened to the first 5 days?

Shes 1 week old today!

Emily, We love you very much and are so happy you are in our lives! Please get better so we can bring you some.

Love, Momma, Dadda and Caleb

The first real downer since she as born...

I wasn't able to write yesterday because the site was down. She had another great day yesterday. Josh touched her for the first time. As soon as he touched her hand she grabbed right on. It was so beautiful!

We were still staying on a straight line until last night at 12:30 am.

We missed a phone call last night. Josh came in and woke me up and said the doctor was trying to reach us. I called them back to see what was going on. Emily had a seizure They were real concerned that she was bleeding in her brain. So they told us that she would get another ultra sound in the morning. They also said that her skin was getting worse. They use a film that they put on her skin to protect the real bad spot that were open. After getting off the phone with her all i could do was cry. Josh held me tight and told me she's going to be fine. But why can't I believe this? How can he see this but I can't? I didn't want to get out of bed this morning. I just wanted to sleep this bad dream away. Josh had brought him into bed this morning to see me but I couldn't look him in his face. Josh told me not to ignore him. I wasn't doing it on purpose. I just emotional had nothing to give him. But then something told me to get up, that Caleb still needed me.

When I visited her today they told me what is happening with her skin was each time they have to take off the film, it was peeling her skin more causing it to bleed a little. They decided to pull it all off and call the nurse that specialized in skin care. She told us today they best thing we could do is to leave it off and let it air dry. The nurse reassured me and said that there as another little baby at Riley that had the same problem by the time he left to go home he had no scars. I wasn't worried about that i was just worried that she was in pain and suffering. I don't want her to suffer.

I couldn't help but cry when I saw her today. I couldn't stop crying. She looked like she was in so much pain. She was bleeding on her belly and arms. Some spot on other areas were real cracked and open that were oozing. They have been giving her morphine to help her with the pain. When shes on morphine she doesn't move at all. It makes me so sad to see her like this.

I had found out that she had had a total of 4 seizure today. He last one was at 12ish. We got her ultra sound back and it hadn't changed since the last one. A slight grade 1. A small bleed but nothing had changed from the last ultra sound. It wasn't getting worse. So that's a plus! Her seizures weren't coming from her head bleeding. But the scary part was we don't know why she was having them. They reassured me by saying she might not ever have any more.  They had given her 2 doses of medication to suppress/stop her from getting these.

Her blood pressure was down a little today and her platelets dropped again so she got another blood transfusion. When i called to check on her tonight they said she had just finished up with the transfusion but that her blood pressure was still a little low. 40/16 (24) They like the number in the parentheses to be about her week. Today she is 25 weeks.

She's been up and down with her oxygen today. When I left her yesterday she was at 40%. When I went to see her she was at 65%. and here PIP was 22 (that was 21 yesterday). Tonight she is at 40% oxygen and a PIP of 24. They determined what her PIP level will be by getting a blood gas.

Tomorrow she will be 1 week old! I can't believe it's already been 1 week. Time is flying and she will be home soon enough. :)

Peaceful, in the pink hat...

Emily has had another good and stable day. No ups but no downs. She is on 30% oxygen and here PIP level is 21. She did have a blood transfusion today. But her blood cultures are coming back good. So it looks like they won't need to take much more blood to run test with. They are going to keep her on antibiotics for another 7 days. And if all looks good take her off them. Her skin is still the same. Her but back and thighs are really bad and then she has a few open sores here and there.

They told me today that they will start feeding her in about 2-3 days! Exciting! Maybe she might start plumping out. :) All this milk I am pumping will start getting used. I took alot to them today. They said "good job momma" Makes me fill good. I can't hold her but I can't bring her the best milk in TOWN!

They haven't given her much pain meds today. She was so peaceful today. I got to watch her eyes move around a lot! I can't wait to see her beautiful eyes. I can't wait to hold her. I can't wait to bring her home. Sigh...

Tomorrow, Josh and I are taking Big brother to doctors appointment and school and then we are going to spend sometime with out little girl.

The day I was released...

I spent a lot of time with her today. I talked with her and just watched her. We talked to the doctor and I said "She's having a good day." He corrected me and said "A good few days." That made me smile big. Some good news was the little boy beside her who was 1.2lbs was going home. I got a big smile on my face and said we can do this Emily! 4 months. That won't take that long at all.

I was so excited to get out of the hospital that I didn't think how I would feel about leaving our baby girl behind. I knew I would be sad but not this sad.

I was okay because I was so excited to pick Caleb up from school. We got home. I unpacked while Josh gave Caleb a bath and put him to bed. I then broke down. I miss her. I can't believe I left. Josh keeps reassuring me that there is someone right beside her 24hrs a day. To me that's not enough. Her mommy should be there right beside her. I have called 3 times since 8pm. They reassure me that she is doing great and relaxed. Her gas was good, so they made another wein down of her pip. (Sorry if I don't spell certain terms right. I am still in the process of looking the correct terms up.)

I am still trying to figure out how i am going to juggle Caleb and not driving and getting to see her when Josh goes back to work Monday. Tomorrow we have a home visiting nurse coming to check on me. We have a lot to do to get our house ready for her. We have to get a move on this and get her room ready. She WILL be home soon enough.

Now how do I relax and fall asleep knowing she downtown far away from me...

4am Chest x-ray

The doctors did a follow up 4 am chest x-ray. From the x-ray the found out that she was still doing good with out the chest tube. No air was coming back into her chest. Although she is doing good with out with out it, it looks like she has some developing premature lung disease. What they are looking at is call Bronchopulmonary Dysplasia (BPD) What is this? Because Emily is on a ventilator that pumps for her (very fast) and the tissues in her lungs are thinner than a tissues that we us blow our nose, they can be damaged from the ventilator. The good news from what I read is that she has constant and appropriate care she will get better. The bad news is the process of weaning from oxygen and respirator dependency can take several years.

The good thing is that she is still doing great with her blood pressure! She was down to 35% oxygen. They did have to go up on the pressure of her ventilator (which is expected- to go up and down over and over - until shes better) to 24%. She's peeing a little to much so they need to increase what they put in.

Emily's first few days...

Emily Rae-Ann Throop decieded to enter the world through a emergncey c-section on May 7th, 2011 at 8:22am. She was born at 24 weeks gestational age. Emily weighed in at 1lbs 5ozs and was 11 3/4 inches long. She wanted to meet her daddy and mommy (Joshua and Erica Throop) on their first anniversary and get here for the Mini Marthon.

It took alot to get her stable but once she was stable was pretty good for the first 24 hours. Lots of people were excited to meet her.

The next 24 hours she started what we will be dealing with a down hill and up hill battle. Emily's lung deveolped a hole in it and need to be reinflated. They put a chest tube in and things began to look up. For the most part Emily has had really good blood pressure and have had No problems with her heart. Her blood platelets dropped dramatically. This made the decied to do her head ultrasound today instead of 10-14 days old. They were worried that she would have a bleed in the brain. But the news came back and the doctor was pleased!

Tonight I got a phone call with bad news and good news. I kept thinking that I can't handle anymore bad news! But the bad news was good news and the good news was good news! Emily is determined to get out of there! She some how got her chest tube out. Thats the bad news... the good news is shes doing fine with out it right now. They did a x-ray to be sure and it came back good. They will do another one at 4am. Let's pray it's still good!

Tonight ended on good news... Will post more tomorrow.

Josh and I ask one thing that each night you say a small prayer for Emily.