Day 30-34

I'm now going to do weekly updates. It's crazy being at home, trying to juggle everything. Well almost everything the house cleaning has not made it to the list yet!

I spend sometime in the morning with Halle for rounds, pump. Then go home for a few hours come back to the hospital at one for a feeding, yes we are now able to start breast feeding, (YAY). Then go back home put the kids down for a nap, and me too, usually have to pump at some point here. Then come back to the hospital at seven feed again, every other night she gets a bath so I stay to give it to her. Ugh see why the house cleaning has not made the list yet. By the time I get home I'm so tired I pump and go to bed.
One good thing is I'm very confident of the Nicu staff here. So when I do have to leave I'm comfortable which is so nice not to have that extra stress. The Nicu here is so different. They are so welcoming makes you feel good. Some of them well most if them remember me from the last two times, so they know me by name and ask about Mason and Adalyn. Everyone has said its so good to have you back, and have just been so wonderful! Mason and Adalyn got to come see her on Wednesday. Adalyn was right in her face talking so sweetly to her, she might be nice after all, haha. Mason has always been sweet and he just wanted to hold her, so he did and his face lit up. I'm so excited to see these three grow up and enjoy life.
Halle has been doing pretty good. We did find out she has a grade 1 brain bleed. We are praying it can resolve on its own, and get any worse. She is at .8 liters and oxygen anywhere between 22%-28%. She is very low on iron so they are trying to get that back up. Her sodium is low also so she is getting that also. She is on vitamins, omega 3 (fish oil?) a Darby shot (help them build up bone marrow), iron, sodium, and high blood pressure meds, and another thing I can't remember. Her heart is still looking pretty good, so hopefully no more surgeries. She is gaining so much weight! She is now 3.12!! Adalyn was home before she weighed that. Mason was 3.14, so miss Halle will be the biggest by the time she gets home. She is working on breast feeding she is an awesome latcher. She just still to tired to suck. On Thursday night after her bath, she nursed! I was so excited that she did it, well at least five minutes of it. With Turners syndrome they can have a hard time with the sucking reflux. So I was very relieved to know that once she's strong enough she can do it. She is maintaining her temp very well, and hopefully by next week she can come out of the "box" and I can start dressing her up! Her hands and feet still get quite swollen poor girl, they look miserable at times. Miss Halle is just perfect, I know every parent thinks that of their kids. But she has over come a lot even from in the womb, till now.

Day 27-29

Halle is doing great. She is at 23% oxygen at 1 liter flow and doing wonderful. We are trying to get her back to Dixie before Christmas!
We tried all day Friday with the insurance people, and the main transport lady was already go e for the holidays. We ran out of time. I was completely devastated. I cried and cried, when I left the hospital until I got to Jon's house. I didn't want to go home, let me rephrase I didn't want to leave Halle. It was her first Christmas, I know she won't remember. I felt so incredibly guilty I can't even describe the way I was feeling. I woke up at 4:00 am just so I could go and hold her for awhile before I made my flight home. I shed a few tears saying goodbye and told her Merry Christmas.
Well I made it home safe, I called and checked on Halle every three hours. I would so hate to deal with the crazy parents such as myself. She did great all weekend she even gained 30 grams. She was low on sodium so she now has to take some.
Christmas was fun with Mason and Adalyn. They were so excited, mason went from one gift to the next opening them as fast as he could go. Adalyn took her time and want to play with the gift she opened, she kept saying " this is everything I wanted" she was just too cute. My kids got spoiled. Halle got diapers and some clothes and a few toys from the kids. It was a good Christmas. Next year should be perfect though, with our family complete!
I got the word Halle was going to come to Dixie on Tuesday, that made my day my nurse would call me to give me updates all day. Which I loved. She got everything ready to go!
This is going to be nice and a lot of work to balance the kids and Halle. But I get to sleep next to my husband in my own bed! I love my bed so much!
So grateful that she is doing so good now. We had quite a few very rough days and we all got through them. I'm just so blessed to have this sweet girl in my life she has already made a huge impacted in it already.

Day 26

Well with some encouragement from me they decided to have a CT scan done with contrast. My nurse was very sweet and actually listened to me! Can you believe that it's a Christmas miracle over here! Well the CT guys wanted to give Halle sedation to make her hold still, she's a preemie when you get them comfortable they don't move. Anyways I kept telling them Halle doesn't do good with sedation, she gets a lot of apnea spells. My nurse was just going to bring the drug with her and hope that we wouldn't need it, well the nurse practitioner said we would need to give it up in the NICU. So they did, she did good so they took her down for the CT scan. She behaved herself while she was down there. When they came back up the apnea started, she did good though and brought herself back up twice, the third time we weren't so lucky my nurse had to manually stimulate her and for quite awhile to get her to come back up. I hate when they turn that dusky color, it scares you I don't think you ever forget that color. The drug did wear off pretty fast and she was back to her normal self.

As I was holding her, I noticed some puss around her wrist and I bended her wrist back a little and I saw a gapping wound! I asked my nurse to come take a look at this. She was like oh my gosh, and called the other nurse to come take a look. The tape that was holding the picc line had dug into her wrist. I can't believe I had been the one to notice it! The nurses have to evaluate her everyday and night, how could they have missed this? It had been there for awhile because it was starting to heal from the inside. I try not to hold that hand because it looks painful because of the swelling, that's how I missed it. My nurse kept saying oh I'm sorry I missed that, she was very sweet. They called in the "wound team" to clean and bandage it.

The CT scan showed everything normal, well nothing that we didn't already know. Where they did the fix to her aorta is still a little narrow and had Edema around the sight. Which is totally normal! So the stupid ultrasound people don't know what they saw. I'm glad that it was normal and hopefully get to go home soon.

Day 25

Well today wasn't so great! I swear as soon as they said we could be transferred they "found" something. I think once your in here your stuck here!
So yesterday night they decided to give her some blood pressure medicine because her blood pressure has been high. Well they gave her the full dose, and in return made her pressure too low. So they decided to half it today, in addition to that the medicine can cause her kidneys to fail! Yes so now we have to add a blood test to all of this to make sure that doesn't happen. They also had to do an ultrasound to make sure she didn't have any clots which would cause high blood pressure. Well the stupid ultrasound saw some narrowing in her aorta below where they did her surgery. This can grow with her, so it's not to worry. They are going to have to either CT scan or MRI her to make sure it's the only artery that looks that way. The MRI they will have to completely knock her with a breathing tube. We so do not need this we can't start all over!
I swear they do one thing, and it's like the domino effect. We can't win up here.
On the bright side her eyes are doing great! It did take me quite awhile to find that information out. When I ask questions they look at me like I'm stupid. Somethings I do know about, I have had two other preemies here! Today was frustrating. Hopefully we will make it to Dixie in January sometime now!

Day 24

Today has been great! There's has even been talk about being transferred to Dixie! I am beyond excited I can possible be sleeping in my bed every night as early as the end of the week. Halle is just being a super baby the last few days, we are able to go up on feeds and down in flow and oxygen everyday. I really hope we are nearing the end of all of this.
They took out her stitches while I was holding her. Some of the skin was healing the stitches in so to start it they cut some of her skin to start pulling the stitches out. She only cried when they snipped her then she just wiggled around, like they were tickling her. She has healed up great!

Day 23

Another great day! We had a few visitors today, so I held her in just a blanket and she wore a hat. This time I held her for 4 hours. Halle just continues to amaze me, she is doing so good! After last week I wasn't sure if I could handle this awful roller coaster we were on, but we both got through it and now we are on the down slope road to recovery and HOME.
I'm really looking forward to home, I can actually sort of see it now. We are a family of 5! It's weird to say I have. Three kids. Life is going to be great now, no more bumps in the road please. I can't wait till Mason and Adalyn can hold miss Halle.
My sister came later in the afternoon, and we went to lunch. I love that even on a bad day she can make me laugh do hard I pee myself. She has been so wonderful through this time. It's good to have some family up here and I'm not doing this by myself. It's nice that I have my father in laws house to come home to and not a strange place. It really does help to know your not alone and I thank everyone who has messaged me and called to check on us.
Okay back to Halle, this evening she was so awake! I FaceTimed Brandon to show him, she was just a grinning when he was talking to her, I think I might have another daddies girl. I love when she just looks do content and happy. I think she is much more comfortable now that they have gone up on her feeds. I just love this girls smile!

Day 22

I had to say goodbye to my babies, I won't see them till Christmas. It was much easier than I thought it was going to be.they said bye them went and played with their friends.
I was very excited to get back with Halle, because I knew I would be able to hold her again.
I got there and she was still doing great! Down to 3 liters on the high flow and around room air on the oxygen. I got to hold her skin to skin. Which is my favorite. She was very comfortable the whole 2 1/2 hours! I didn't want to put her down. I live looking down on my chest and seeing her sweet face,. The longer you look at a preemie you start saying stuff like she getting so big she has little chunky cheeks. I stared at her the whole 2 1/2 hours when I had to put her back, I tools picture of her next to her doll and I realized she's not big at all! I laughed the picture makes her look chunky which is cute. If you've never seen a preemie they are amazing! They are so tiny and their bodies do work, they need help but they are here, what a blessing they are. Oh I love all three of my preemies!
Today was a great day! She kept her temp up and her oxygen was fabulous. We need a lot more days like today and life would be fabulous.

Day 21

They took the breathing tube out!!!
She struggled at first, because she decided to throw up as soon as they took it out. She worked through it and is now on the high flow nasal cannula. Her oxygen levels are coming down they are at 30% which is great, 21% is room air. She is doing pretty good, they are giving her treatments still, which is helping.
They also went up on her feeds. She hadn't pooped in a few days, so they were going to give her a suppository and as soon as the nurse pulled down her diaper and about to put it in she pooped everywhere. I can't blame her though's things are extremely uncomfortable. She is back to her normal routine now.
I left and went to Brandon's Christmas party. I had debated if I should go or not, I did feel extremely guilty, for deciding to go. It was so good to give my other babies a hug and kiss. Mason was playing with some trucks, and Adalyn was playing in the cabinet, with some sweet hot pink high heels on her back was toward me. Mason saw me have me a hug and went back to play with his trucks, he didn't seem to excited to see me, but Adalyn I'll I said to her is sissy what are you doing? She looks up and turns around and yells mommy! She kicked her high heels off and ran and gave me the biggest hug ever. She didn't leave me side! Mason would come and give me a kiss as he wanted to and told me he missed me, then he would go play with the kids again. It was very nice to see them again it's been 3 weeks!
I called and checked on Halle every 2-3 hours and my nurse would call me. She kept getting better as the day went on. She loves her binkie and she's very strong, when she's on her stomach she can lift her head from side to side. She went down to 25% oxygen. She loves her voice!

Day 20

She did great today! She is down on her oxygen. She is getting a little more food and handling that great. She was quite fussy today, she acted like she wanted the breathing tube out! She kept trying to tongue it out, the nurse finally said okay let's have your mommy hold you this afternoon. I was beyond excited, and at the same time worried that she might not like being held. I was very relieved to know she loves being held the best thing that has happened so far, since she probably won't be put down at our house. I held her for an hour an half she kept her temp up the whole time. I just stared at her the whole time, (like I was a creeper.) I was on cloud nine.
They had to do an ultrasound on her right leg, because they had to make sure there wasn't a blood clot from the iv thing they had to put in for surgery. Her right leg has a lower blood pressure than the left leg and both arms. I'm happy to say no blood clot, but her artery isn't pushing back the right amount of blood, they aren't concerned about it they are just going to watch it.
They have started her on a steroid in preparation of getting the breathing tube out either tomorrow or Sunday! I really have high hopes it will work this time, since today she just seems bugged by it.
This girl just amazes me, it's funny that you can have such a bad day, then the next day be "better".

Day 18-19

Today was a great day! She was very comfortable today. Each time I would talk to her she would smile. She was also much more awake today. She did join the 3 pound club! I can totally see it too her little cheeks have started to fill out, and her skin doesn't quite hang off of her. She was just doing great!

Today did not go over very smoothly. She got an x-ray early in the morning, and that moved her breathing tube down too far, by doing so it collapsed her left lung again! So they had to up all of her vent settings again! She has to start all over. Her blood gases were all over the place like really high, they couldn't get them back to normal range. They poked her so many times. They started a vibration therapy to loosen any mucus that would be stuck in her lungs, they are also giving her treatments every 6 hours.
By the early afternoon things settled down a little bit. Until the machine STOPPED working, yes it stopped, my nurse was very quick and bagged Halle before her stats even dropped. Halle loved being bagged, (I really think she was sick of the loud noise and the vibrations.) while the RT's were trying to figure out why it broke and getting the new one to work, Halle was wide awake staring at everyone like you are all morons! It took them 45 min to figure it all out. We waited for about a half in hour did another blood gas and x-ray. The blood has was still really high, and then the x-ray showed they had over expanded her lung. So then they decided to switch ventilators to the one she was on before surgery. Well we got her switched and she loves it! She was on 40-58% oxygen now she's down to 30%. She just looks so much more comfortable now. I really hope this is what she needs to get off all of these machines.

Day 17

Today started out great.
She was getting 4cc of milk every 6 hours and was handling that like a champ! I was so excited as you can see I'm quite nervous about feedings after what happened the last time. She is back down to 30% oxygen and is doing good.
Her lung is looking so good they might even extubate her tonight or tomorrow. I am so looking forward to hold this little girl again, it's been a very long 2 weeks!
Since this is a teaching hospital, they do a crap load of studies. We have been in a lot of them. I really hope they can get stuff out of them, so we can figure out how to treat some of the stuff that comes up. Better yet could you imagine if they figured out why the heck my water likes to break at 29 weeks! Ahh that would be amazing, oh how I wish I could just be a boring pregnant patient and make it to full term and actually leave the hospital and take the baby home with me!
I'm living in a fantasy world today, as she is doing so well. I imagine her being transferred to Dixie before Christmas so I can sort of enjoy the holiday. Her coming home and not being stuck in this box, so I can hold her and her big brother and sister can hold and give her kisses. I love this fantasy world. As I'm daydreaming they decided that she was ready to be extubated.
I stayed in the room, the doctors were so positive everything looked great. Her lung was fully expanded they gave her some steroids, to help reduce inflammation when pulling out the breathing tube. They got all ready to pull it out. By this time I was very excited, this means I'm so much closer to holding her. My excitement left as soon as they pulled the tube out. She was already pissed they were pulling the tape off. So when they pulled the tube the c-pap nose prongs weren't sealed right. She started gasping and flaying her arms around, kicking her legs. (Imagine of someone drowning.) that's what I was watching, her diaphragm would sink way down. It was the scariest thing we tried to calm her, I was able to put my hands in and hold her hand. I wanted to yell just put the tube back in, but I so wanted her to be able to do this. I wanted to leave the room, I didn't want to sit there and watch her struggle the way she was, but I was frozen I couldn't move I just stared at her little body. They had to bag her, they tried a couple of things nothing was working. They kicked me out because it was shift change.
I stood outside the door, and checked on her a few min later they were doing a blood gas and had her on the c-pap. I went downstairs to grab a sandwich. When I returned she was re-intubated, my heart sunk everything came rushing to me. I had to leave. She was "stable".
THE START OF A PITY PARTY
(you can skip)
Again I left sobbing, I don't want to be here anymore it's Christmas time all I want is to be with my family. It's not fair that I can't go full term. I want to be able to take my baby home from the hospital when I go home! I feel like we are going no where, she's stuck now. I know this is "normal" up here, but she wasn't on oxygen until we got here. What did they do? She can't breathe now. Did she forget? My other two preemies were dream preemies. I mean they had there problems but nothing like this. I am very grateful that she's here, don't want anyone to think I'm not. I am very blessed! It's just so incredibly hard being away from my family dealing with all of this stress, seeing what she's going through is killing me! I usually do the 12 days of Christmas and I'm not there to enjoy the look on there faces when they can open there first present. Today was a very emotional day. I am so glad tomorrow is a new day, Halle and I can make it through I do know that.
Hard days just suck!

Day 16

Today started out not good. They had to switch ventilators this one is called The Jet. It's loud and makes her little chest vibrate, she has to lay on her left side and it's making her head all miss shapen. Her swelling looks so much better, she is starting to look like herself again.
By the end of the day she was improving, her lung looked so much better. The doctors were very pleased that it had happened so quickly. She was handling the 2cc of milk she was being given. I was so excited she looked better which made me feel so much better. Oh this little girl now weighs 2 pounds 11 ounces!

Day 15

Today Halle was doing well. They were going to start ween her off of the ventilator. She did even need a lot if morphine she was doing great. My mom and Brandon had to go back home. It was a lot harder to say goodbye this time. I think it's because I know now it sucks to be alone!
One good thing happened after they left. The doctor even said I might could hold her tomorrow! I let my guard down! If you have ever been in the NICU I think you all know what I mean, don't ever let your guard down! As soon as I even allowed myself to think she really is on the right road to recovery her left lung got air bubbles outside of her lung. They were watching closely and she had to lay on the left side. That's where her stitches are! I can't even imagine how uncomfortable she is. She is fighting so hard, I really don't know how much longer her little body can do this. I so wish I could magically take her place.
As the day went on her carbon dioxide got worse they kept messing with her vent settings. Around 5:30 they were getting another blood gas, and the girl didn't get enough blood to run the test, but the problem was the nurse suctioned her out and they have to wait at least 20 min after you do that to run the test again. After that her oxygen went way down, so we had to bump the oxygen up. So I waited. Finally we got to do the test again, not good news her CO is high again. Her left lung had collapsed.
That's when I had, had enough I had to get out of there. I was about to loose my mind, she was doing so good. Now this. I was supposed to be able to hold her tomorrow. Now when is that going to happen? I just want to be home, holding my kids. I want to just scream!
I need to get ready for Christmas, but I don't want to leave Halle. I broke down, I'm alone! I didn't want to tell Brandon the way I was feeling, he's already under enough stress at it is. So I sat in my car and sobbed. I'll I really want is to hold her, Go home play with my kids put them to bed, cuddle them. I really hope they'll forgive me for being away this long.
Today was not a good day for either of us, but at least we have a new day tomorrow!

Day 14

Halle is 2 weeks old today!
This little girl has gone through so much already in her short 2 weeks here. We love her so much and are truly grateful she is here with us.
She is doing well they took out her chest tube already, which they said it could take days. And she just had surgery yesterday! When they took out the chest tube her swollen hand/fingers wrapped around my finger, and as they were taking the tape off she would look at me and try to squeeze my finger. Her hand was so swollen that she could quite grasp my finger, but I could feel her fingers get a little tighter as they were pulling the tape off. I absolutely hate seeing her that way, she too little to tell you how bad it hurts, and with her breathing tube in she can't really cry. It breaks your heart. Her blood pressure is now high, so they are giving her meds for it. They are transferring her back up to the NICU. Which I am so happy about, it is much better up there, not so scary. Plus the CICU doesn't like these tiny babies, ha it is kind of funny watching them try to move her and change her diaper, the NICU nurses just kind of toss them around. They don't break!
When we did get back up to the NICU it took them quite awhile to get things settled down. Apparently every floor does everything different. So they had to relabel all of her lines that went everywhere. She was doing really well until the nurse was taking off the extra lines from the surgery, and of course they were taped on. Poor Halle was not happy at all I tried my best to keep her calm, all I can really do is put my hands over her head and hold her hands. The whole time I'm fighting the urge to just pick her up and hold her against my chest and tell her everything will be okay. It's so hard to have this "cage" keeping us apart! She was crying without the sound it was so hard to watch her face wrinkle up and try to arch her back trying to get away from the nurse. I wanted to cry for her, well for me because watching your child in pain hurts! They finally finished it took Halle quite awhile to calm down, each time I thought she had gone back to sleep I would slowly try to take my hands off of her, as soon as they would come off, her eyes would pop back open. So I would put them back on, I am willing to do anything to keep her calm or more comforted when ever. Trust me it's not comfortable at all for me to put my arms in the little holes, and have to maneuver around all of the wires and cords, to hold on to her, but like I said its worth it if it makes her comfortable.
We went to dinner, and came back she was doing quite well she had some more morphine, then she was out! So we left and went to sleep ourselves.

Day 13

SURGERY DAY!!
This is going to be the longest, hardest day so far in my life! They let me kiss her and talk to her for about an hour before her surgery. It has been very hard not being able to do this for the last week in a half. She would smile everytime, I would say Mason is going to hold her and that me and him where going to fight over who gets to hold her, I told her how much she loved by so many people, and how many prayers are being said in her behalf. I am amazed at how many people out there are. Her name is in quite a few temples, actually the St. George temple has had her name quite a few times, so thank you so much for the continuous prayers and thoughts.
As I sit here and the minutes feel like hours, we got an update, they were having an extremely hard time getting in all of the lines that they needed in her. After that, every phone call I hope they call Halle's name, it means there an update. We have now been sitting here for 3+ hours and have only had 1 update. My nerves are getting the best of me at this moment, and my mind is wondering which is never a good thing. All I can do is pray and feel very helpless. It's a horrible way to feel.
The surgeon finally comes out, at hour 4, and said everything went fine, they were able to go through the side to the back. It was a very good thing they did that it was so much less risky, if they would of done it through the front they would of had to split her ribs and put her on a bypass machine. The side they went In between the ribs. A sigh of relief went over my body. He did say this could happen again, but next time they could use a balloon thing to open the aorta, and it not be so invasive. 2 hours later we were finally able to see her. We walked down a hallway and it opened up to a bunch of rooms. We were in room 12 we walked in, I was not as prepared as I thought I would be to see her.
She was swollen, of course but all of the tubes and wires, that were coming out of her tiny swollen body was sad. She was still out from the anesthetic from surgery. They had to x-rays, and when they did that her chest tube fell out! So they had to sterilize her again to put it back in. The one IV thing that takes her blood pressure every time her heart beats, has made her whole right leg a purple bluish color, they are trying to get the blood flow back in it. The nurse had told us they had to use a lot more blood than they were anticipating. From that it look as though her skin was so dry and flaking off, she looked awful/scary.
She is doing well considering she just had heart surgery, she has had a little problem with her blood pressure and her carbon dioxide came way up, they had to mess with her vent settings to help her out.
We left to go get dinner, and when we came back she looked a little better, she opened her eyes a little bit, and was moving around a little bit too. She is on blood pressure medicine, but not much. They got her carbon dioxide down to a more normal range. It was an extremely long day, that I never want to repeat.

Day 11-12

She has done so good the last few days, she sleeps we do her cares she's awake. She even smiles sometimes, I know not real smiles, but I can pretend. She has had a lot of tests to make sure her infection is hone before they do her surgery. She passed thank goodness.
I'm so terrified of the surgery, I just am scared to see her afterwords shell have a lot more tubes and wires, and she'll be even more swollen.
I've been thinking a lot about her future and how rude kids can be, I just hope I can raise her to understand her conditions and be okay with them. Just like any other child you just want to protect them from any harm.
I'm getting extremely home sick, I mean it's Christmas time your supposed to be spending it with family getting ready. We don't have any decorations or a tree up yet! I want to at least try to make it some what normal for Mason and Adalyn, luckily they are still young. It just makes you all torn up inside, and have your emotions all over the place!
I do get to see my husband tomorrow, and I'm so looking forward to seeing him. We have never spent this much time away from each other! It is so hard dealing with everything by yourself and having to worry about things at home, and Halle's health. It's exhausting I would sleep so good if only I didn't have to pump! I thought stress was supposed to diminish your supply, not here so this girl better pick up an appetite after this surgery she's got a lot to catch up on. Haha

Nicu day 10

Halle is stable her bowel infection is gone. It was a crazy day, they finalized her surgery, it will be on Friday. We had some medical students come take a look at her, they were having a class about her conditions. Halle slept all day again, which I'm very grateful for that since she's going to have some really hard days up ahead.
That really was all that happened today. I'm excited and scared for her to have this surgery. Hopefully she'll start growing and breathing on her own after all this. The doctors seem to think that's what's holding her back. Friday is going to be a long day.

Nicu day 9

It was a good day! She slept most of the day, she would wake up during "cares" that's when we take her temp, measure her belly, change diaper, switch the oxygen probe things, and switch her position. After the cares she would go peacefully back to sleep. I sat here all day like usual but it was a boring day finally. We love our boring days.
There's has been some talk that they want to do her heart surgery later this week or early next week, because of her respiratory distress. They are hoping that once they fix her heart she can come off the vent. I really hope they are right. Even though the talk of surgery scares me, she's so small! Real though I don't think at any time I will be okay sending my baby into get heart surgery.
I'm doing pretty good considering everything that's going on. You just have to take it as it comes, or you will never survive the Nicu. There are just way too many bumps in the road. You never can just assume anything. That's why we all go crazy in here. Your baby can be doing so well and the next thing you know, they are sick again. I am very grateful that my other 2 preemies were boring ones, and just needed to learn to eat and grow. Some of these babies are in here for months and months. 3 babies that are in my room have been here for 5+ months!

Nicu day 8

She is doing pretty good today. They keep messing with her vent stats, to get her comfortable and not working so hard. They have to take blood from her every 4 hours and her poor heels are black and blue, and with the swelling that she has it's just making it worse. She's very tired, Poor girl has gone through so much already, and there's so much more she has to go through.
Since this is a teaching hospital, she is in a few studies that they are researching, none of them are really invasive. So hopefully they can get something out of all of this.
I'm missing my husband and kids so terribly much, it's quite miserable being without them. Thank goodness for technology AKA FaceTime. This is wonderful, I can see and talk to them, and they get to see Halle.
Thank you do very much for all of the prayers and thoughts being said for miss Halle, they truly are working.

Nicu day 7

Well I was awaken by a phone call. It was the hospital saying she wasn't doing good, and they had to put her back on the vent, and put her back on antibiotics. When i got there they were doing x-rays, and they moved her a little and the breathing tube slipped a little. All of a sudden her stats dropped, and there was a lot of doctors,nurses, rts bagging her to make her breath till they got the tube back in. Yes I was right there just numb I didn't know what to do or say, or even feel at that moment I froze. They did get her back on and stable, it did feel like forever I'm sure it was only a min or so. They were still getting that bloody stuff out of her belly.
The vent was a good thing, she wasn't struggling, she was sleeping. They had to start giving her pain meds, she was just uncomfortable, it also made her sleepy.
These two special people(I won't mention names but you know who you are.) brought me and Halle a care package, we all need some chocolate while in here, I'm even sharing with the nurses. It meant a lot to me that they would think of me since they are going through a trial of their own. I hope they know they helped make my day. My family was down, and they talked me into running to the mall with them, so I would have a break. It was nice to just get away for awhile, I bought a few little things for Halle, and I bought Adalyn and Halle their first matching dresses. I got a few other things then we went back to the hospital, to say goodbye. Halle was doing do much better, she was actually responding to her name again. She would open her eyes for a split second and close them, she was still very tired, but wanted to be awake.
She was stable again so I went to my father in laws house, to get some rest. Hopefully not get another call.

Nicu day 6

She is one week old today!
It is not a good day. She is struggling breathing, her little chest just caves in they are giving her a lot of oxygen, and she can stay stable for a little bit then she just can't do it any longer. All day we had to mess with her c-pap it just wasn't working for her. They also found bloody stuff in her feeding tube so they stopped her feeds. This is a big sign of a very serious bowel infection. Very common in babies that have her heart defect. She just kept getting worse!
This was an awful day, my heart completely broke! She would look at me, and I could just tell how miserable she was. It's the worst feeling in the world to know there's nothing you can do, but watch her struggle. The day was a down ward spiral. I really wish I could forget it.
My family did come up later this day, and took me to dinner, while the Nicu was closed. I came back and she was still the same struggling, and her blood gas was worse, That's a blood test they do to check the carbon dioxide and she was not venting it out, her body was starting to fail. I had to leave and go to sleep my body was just to tired to stay.

NICU day 5

Im starting to feel extremely guilty from being away from Mason and Adalyn, I'm even thinking I'll go home for a few days next week then come back up. It's hard for the kids to be tossed around.
Brandon had to go home today, I'm scared to do this roller coaster by myself. I have a lot of family but none of them compare to Brandon. It's nice to know that we are feeling the same things, so it's easy to talk about everything. Now I have to be the communicator and tell him everything that's going on.
The doctors were going to take the c-pap off and put the nasal canal back on, needless to say she did not handle it at all. She had to be suctioned out about 10-15 times today, she would be doing good then her oxygen would just plummet. She hates for the nurses to mess with her today, I think she's sick of everything.
The cardiologist came in and said there was a surgeon that wanted to do the surgery now, but the cardiologist wants to wait till she gains a little weight. I'm terrified to send her into surgery, but at the same time I'm ready, her heart and the meds they are giving her is the reason she's having trouble breathing and with her feeds. They did bump up her feeds to 4cc every 4 hours.
Later on that night, she was very good (she must of liked her nurse) we were messing with her and she stated stable the whole time, she gained 20 grams, and she finally pooped! Yes we get excited about poop here. She was doing so good I left to go to my sisters house.

Nicu day 4

We got to the hospital late and we missed rounds. The doctor came in to talk to us about her, and that the cardiologist would come and talk to us. They weren't sure if they were going to do the heart surgery the next day or wait till she grew a little. We had the whole cardiologist team talking to us throughout the day, so basically they would prefer her to gain 400 grams but it could happen any day. It makes me very nervous to send my very small child into surgery, I mean not just surgery it's heart surgery. I'm scared out of my mind. We got a lot of information this day, a lot of it was just deciding when to do it. They did start feedings they are 2cc over a 2 hour period every 4 hours, so its basically nothing we all laugh at how slow we have to go. It is best for her heart, there might not be enough blood flow to her intestines, and if they go too fast Halle can get very sick and her bowels can perforate and that's immediate surgery. So for now we go nice and slow so that can't happen. So they finally took the tube out and they put her on the nasal canal, she was on room air and doing great. They did have to put her under the lights. I even got to hold her! It felt like forever since I was able too, but she started to desat on me and the nurse took her, it turns out her little oxygen monitor came loose. I was bugged because she wasn't struggling or anything while I was holding her, and this was my first thing that made me miss drmc Nicu they listen to you, up here they don't they do what they think is best, it's like they are not your child, I mean you already kind of feel that way because you have to ask to hold them. It's just hard to have a preemie let alone a sick one, yes there is a difference.
She did good for the rest of the day, but she did loose weight she's on the low side of 2.7,

NIce day 3

When we woke up things were still a little crazy trying to get everything they wanted done with her. We stayed and held her hand and tried to keep her calm. They were going to take her off the vent, but she was just too tired to breathe on her own, probably from being sedated way too many times.. We left about 1:00 to go take a shower and take a much needed nap. I wasn't feeling the best, I mean gosh I had just had given birth now add more stress to my poor body.
We had a good nap, it was longer than I had planed, since I wanted to be back before the Nicu closed at 6:30 we didn't make it so we just ate at there cafe, it's really good. Once they opened we went in and she was stable. Finally she was calm and just resting but responsive when we would talk or touch her. We stayed for awhile, Then we had to go home.

NICU day 2

Monday 28, the day started out great the doctors were still very impressed at how well she was doing. I was able to hold her again for an hour, then it was time for me to be discharged I was so ready to be home and sleep in my own bed! We got home and ate lunch when my kids came home, I was ready to get them back on their routine. We played for an hour then it was time for all of us to take a nap. When we woke up the kids rode their bikes for awhile, and we waited for our dinner we ate then got ready to go visit Halle. We dropped the kids off with my mom and we backed out of the driveway and my phone rang, I didn't know the number when I answered I heard the voice say is this Ashley Halle's mom? My heart sank, I started to tear up as she began to tell me to get to the hospital, they we're going to life flight her up to primary's that her Aorta started to close off. The news we had been dreading was here. I just looked at Brandon and said this is not good.
As we got to the hospital I had lost it, I was terrified not knowing what to expect. I got to the room, to my surprise she was 'stable' the doctors we're able to give her the meds that she needed to keep it open. The life flight team were there getting everything ready to go. I was able to ride with her, she was quite feisty they had to sedate her twice during the flight she kept trying to pull the breathing tube out!
When we got to primary's everything started to move very quickly, they pushed me out of the room and made me sign a crap load of papers. When I was finally let back in it was about 1:00 am and they had to do labs, and the Echo on her heart. During all of this Brandon was driving up, my sister was with me so I wasn't alone. When the Echo machine got set up and they started doing it Halle was awake and she kept grabbing the Doppler and the girls hand so they had to sedate her again. Poor girl was so tired. I got tired about 3:00 am and my sister and I went to go lay down in what we call 'the jail' seriously though you would think they would have a nice room to put you in, they don't! I slept for about an hour until Brandon got there and we went back in and got the results of the Echo she has Coarctation of the aorta a hole and only 2 valves (most people have 3) then the random vein in the left ventricle. The most important thing is the aorta the rest is on the back burner.
We went to sleep after this at 5:30 am

NICU day 1

Sunday 27th, Halle was doing so good, better than any doctor could of hoped for she was on room air and 5 liters of high flow. I got to hold her that morning and she loved it snuggled right in and stayed for 3 hours. They eventually went down to 4 liters later that day her echo from her heart came back and it was still looking good, had a few problems her hole in her heart was a bit bigger than expected but the big issue the narrowing of the aorta wasn't there.

We had a lot of company come and see her, so a lot of people coming and going all day, I got tired in the later afternoon and went and took a nap. Mason and Adalyn saw her also Mason is I love with her Adalyn was her normal crazy self, she said hi Halle then she was done, Mason loved to hold her hand he cried when he had to leave and asks everyday if he can come hold her. Brandon got to hold her too,

Everything about Halle!

Okay so I know there are a lot of questions about our sweet new daughter, so I'm going to start at the beginning, it's super long.

I found out extremely early with this pregnancy really with just a feeling, I took the test and was shocked I mean we were trying but I had an over whelming feeling something wasn't right I remember telling Brandon that something bad was going to happen, ( I figured a misscarage) but as we had our first ultrasound everything looked great heartbeat and just perfect. Our second ultrasound at 8 weeks was a different story, she had a cystic hygroma which is like a sac of fluid at the base of her neck, it's a huge sign of down syndrome I was by myself and in shock. I left the doctors immedatly called Brandon and told him I broke down for five minutes then I was good. Down syndrome isn't that bad she would still be my kid. So I was fine family members kept asking if I was okay with the news and I really was. That weekend came and I started bleeding (I do in every pregnancy) so I called my doctor and they rushed me in for an ultrasound to make sure I wasn't miscarring to our relief her heart was still beating but the hygroma had gotten a little bigger. Weeks went by and I had an ultrasound every week, but when I was 14 weeks and a few days I started bleeding again so I went back in that day, by myself i figured it was nothing, I was very wrong! As soon as the ultrasound text started we saw Halle's heart not functioning like it should of been, and her heart and lungs had accumulated quite a bit of fluid around them and her hygroma was bigger than her head. At this point I was just trying to keep it together, and I just looked at the tec and asked if this was one of the deadly chromosome disorders they were talking about, she looks at me and says she thought so. My heart broke but I still held it together, until the doctor came in and gave me a hug that's when the tears came, he sat me down with a box of tissues and told me that most likely that she wouldnt make it the next few days because of all of the fluid. I left and got in my car and just sobbed, I called my husband in a state that I have never been in before (pretty sure I scared the crap out of him.) I calmed myself down enough to drive myself home, my mom was watching the kIds for me and sent me a text on my way home asking me how it went I just replied not good at all. As I walk in the door the tears just came steaming down my face and I told her in between the crying. At that moment I just want the people close to me to know What was going on so I sent out a text to close family members and friends. I do better talking about things than holding it all in, and I didn't want one of them to say something about the pregnancy and then me break down in front of them. I was good for the rest of the day when the kids where around I didn't want them to see me upset. When they would go down for a nap and I was all alone my brain wouldnt shut off so the tears would always come, night times were bad I would wake up in the middle of the night and just sob, Brandon was so wonderful I knew he was feeling the same things I was but he was my support during this time. I had an ultrasound like every other day to basically just to see if her heart had stopped beating. Yeah it sucked not know if I was going to have a baby that day or not. My emotions were every where, one night unmade Brandon tell the kids about how she wasn't going to live with us because she was sick, Mason looked at him and said is she going to live with Jesus? ( just a week before he had asked me about death so I told him that when some people do get sick then they live with Jesus and us anymore) he remembered and totally made is tear up. We decided to do an amnio to make sure of the diagnosis at 17 weeks I was very nervous it wasn't as bad as I thought it was going to be, but I never want one again. 1 out of 200 can get an infection or have there water break, I was one of the lucky ones that had there water break! Yes it broke at 19 weeks we went to the hospital and you can choose to be induced but I was not ready to say goodbye so we went home on bed rest to wait for basically infection to begin, I had to take my temp every 3 hours, the temp never came and my water started to accumulate again by 21 weeks it was back to normal her heart had figured out how to work with its defect and the fluid around her heart and lungs went AWAY! Her hygroma got so small, the doctors couldn't believe it. It seemed everything was going so bad to everything going good. The amnio came back and she had Turners syndrome it's a chromosome disorder, we're she only got one X instead of two(I'll go more into that later) the only other problem she was facing was they thought she had hypoplastic left heart disease the left side was very small they wanted us to go to primary's to see the cardeologist we waited till 24 weeks to go since I knew that if she didn't have problems she could survive outside the womb and we made to the appointment, we saw him and the only thing he could see is a hole in her heart and the right side was dialated(that's why the left side looked so small) but it was functioning, he couldn't see her aorta they way he wanted to so we scheduled an appointment to go back up on Nov 18 I told him I might not make it because usually by then I'm in preterm labor and in the hospital. We made it, besides all of the problems the first 23 weeks it was a good pregnancy contraction wise. Everything was the same it was before but he got a good look at her aorta and it looked good, oh and she has a random vein in the right side of her heart happens in a about 1 in 200 people. So we drove back home that same day, mason wanted to go to school that day so we just went up and back. Saturday nov 19 I went Christmas shopping that day with my mom and almost got all of my Christmas shopping done, about 8 we went to Walmart and I had a tiny contraction and I felt wet I did have to use the bathroom so I just figured I peed on myself! Ha so I ran to the bathroom went and was fine went back to my moms house finished wrapping my presents and then Brandon and the kids wanted a pizza so I went to go get one as I got out of the car gush my water completely broke I had black pants on so I went in grabbed the pizza and ran back to the car. Went home packed for me and the kids and we were off to the hospital. Well I'll skip all of the boring stuff in the hospital for 6 days went my contractions kept coming and going all day Friday till 9 that night they didn't go away consistent at 6-8 min apart until 2 am when they decided to up the pain by 10 and come every 2-3 min they checked me and I was only a 4! At 6 they moved me to the delivery room and they were the most intense contractions ever, coming every 1-2 min and still a 4 I wanted to do a natural birth I just hate being numb it's awful. The nurses told me I had to get one, after a c-section you have a high risk of an uterine rupture and other things so I got one at 9 worst experience ever! With hard contractions one after eachother in a ball hurts like nobody's business while I was in the ball my mom was holding me up you really can't control your body when your in that much pain. During that 5-10 min my blood pressure dropped way down, threw-up from the epidural and got a temp my mom was like I could feel your body get so hot so she was the ond that said check her temp. Then the epidural only worked on one side so I was still having to deal with the contractions she tilted me and it started working I was completely numb couldn't feel a thing!! At the end I thought I felt pressure but wasn't sure and she had just checked me 5 min before and I was an 8 so I just kept it to myself for a few min I told the nurse it wasn't going away but it wasn't bad she checked and said your full there's the head, then a rush of nurses and doctors came in the room they got me ready and my doctor was like oh she's delivering herself so he only needed a small push I literally lifted my head and she was out, she cried!! I couldn't believe it she looked so good. The Nicu took her and got her stabilized and they brought her back to me so I could hold/see her for a min. She was born 11/26/11 at 12:00 at 2 pounds 9 ounces and 14 inches long.