CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY

(March 31, 2008)

Today is the first annual congenital diaphragmatic hernia awareness day. Only 30 states have proclaimed this, including Kansas and Missouri. If you want to know if your state is involved you can find a list at breathofhopeinc.com

Diaphragmatic hernias occur in over 1 in 2000 births. There is a 50% survival rate for these babies. There is no known cause for these birth defects.

To help celebrate and honor Kaden and the other survivors, and to keep the memories of those who did not survive alive, please light a candle at 7pm (your time) and keep it lite for one hour. Thank you!!!

Beautiful Smile!!!

Ava is just hanging out...she is not doing horrible, but she is not doing as well as she had been. Last night I got my first, true, Ava smile. I was talking to her and she just gave me the biggest smile, THREE TIMES!!! So, of course I grab my phone to take a picture of it to send to daddy and she wouldn't do it again. It melted my heart. I forgot how sweet a toothless smile was.

Nate and Kaden left yesterday. It was a pretty good trip, but of course Kaden was ready to go home. We took him to see Horton Thursday and we were actually able to see the whole movie. Kaden did well watching it, only lost interest a few times. He really liked the end when they were singing. It is so fun to watch him enjoy simple things. He, too, has a beautiful smile.

Thank you for ALL of the wonderful job ideas. Oh, and thanks for letting me know who was voted off...it was driving me crazy not knowing...it even drives me more crazy since I don't know how I missed that part of the show. I sometimes think I am losing my mind up here!!! Take care and have a wonderful weekend.

Two ????'s

I am sitting here at the hospital a little bored. Ava is sleeping and I am anxiously awaiting Nate and Kaden's arrival. So I decided to ask all of you two (totally non-related) questions.

#1-Does anybody watch The Newlyweds (or something like that). It is kind of like a couple "survivor", not that I watch Survivor. It comes on right after Oprah's Big Give. Well, if you do and you watched this last episode can somebody tell me who was voted off. I have been wondering. I watched part of it and for some reason didn't watch the very end so now it is kind of bugging me not knowing.

OK second question...

#2-Nate and I have been discussing the whole working situation. I am no longer a stay at home mom (oh for the last year or so), but with Ava we really feel I need to be. There is no way we would put her in to daycare and take the risk of her catching something. So we have been pondering the type of stay at home jobs. I really need to work. We are trying to save up enough money to build a house on a lot that we have, but unfortunately with all of the doctor bills (and boy there is A LOT) that will be absolutely impossible without a second income. Right now we are in a small apartment, that is going to be extra small when Ava comes home. My husband is a police officer and his schedule is really crazy so I think personally it is crazy for him to think about a second job. I thought about working part time when Nate gets home from work, but like I have said, his schedule is not very reliable on him being home at a certain time.

With Kaden it has been kind of easy. He has a nurse that is with him during the day while we are gone. Ava will most likely not get a nurse (which is a good thing, meaning she is "healthy" enough). I have thought about watching two or so newborns-toddlers, but then we run into problems there...what if they are sick, what if my kids are sick and/or at the hospital (which will happen when she has her next surgery). So that is where I at....any ideas that will allow me to stay at home but make enough money to help get rid of the bills (if that is even possible : )) and eventually allow us to build a home? Thanks in advance.

Two Steps Back

Darn sedation!!! I think this is what causes Ava to get into sticky situations. Every time she is sedated for a procedure she has trouble maintaining her sats and keeping her lungs fully expanded. It happens every time. Right now the doctors are debating whether or not they need to put her back on the vent. This time however, they will try using a mask rather than putting the tubing back down her throat. I do not like this at all, this is what Kaden went through before being trached (I am not saying Ava is going to be trached), and it made him stop breathing. So I imagine it forcing air into your lungs making it difficult for someone to exhale. I do not know how true this really is but that is why I think Kaden had stop breathing while on it.

Right now they are trying breathing treatments on her with the same concept, but it only last about 10 minutes. She is upset the whole time, so I can only imagine how mad she is going to be with a mask on 24/7. Then I see them having to give her more sedation and the vicious cycle will keep going and she will end up intubated. I am going to plead my "case" to the doctors and hope they agree, of course if they absolutely feel it is in Ava's best interest to be put back on the vent then that is what we are going to have to do. I want to do what is right, but I want her to be comfortable at the same time. As we all know, I am not a doctor, I am just a mommy trying to keep my baby girl happy but at the same time I want what is best for her. I trust the doctor and her judgement.

I just talked to the doctor and she said what I was thinking without me having to give my input. She did say that if it doesn't work what they may end up doing is intubating her because she will need it for her G-tube surgery anyway. This makes sense to me, but we still do not have a surgery date and I don't want her to just hang out on the vent. Only time will tell what is going to happen. I will keep everyone updated.

My two boys are coming up today!!! I can't wait. The Easter Bunny had stopped by Sunday and Kaden's goodies have been waiting for him. Lucky Kaden, two chances to find eggs...not that I think he really cares too much about egg hunting. I am not sure if we are going to get a chance to watch the movie this week, it just depends on how well Miss Ava is doing.

Please keep Ava in your prayers, she still really needs them.

update...

Ava got her chest tube in and she seems much more comfortable. She is sleeping peacefully and definitely not pulling so hard to breath. The doctor said that when they inserted the tubing they pulled out about 20cc and another 50cc came out...that is 70cc in less than one hour (more than 2 oz). She did not have to go on the vent (knock on wood). She is out, I think it is still from the sedation so every once in awhile she stops breathing for a second but starts breathing again on her own (some newborns do that anyway). I am so happy that she is feeling better. Her bottom is looking better now as well. We started putting critic-aide on it instead of the diaper-doo. It seems to be helping right now. Thank you all for the different ideas on diaper rash care. I will keep it in mind if this does not continue to work.

I hope you all have a wonderful night.

Oh I wanted to leave you with a dream I had last night. Nate called me and Kaden was just talking away. He was using a higher pitch than he normally uses but he was able to form words using this pitch. I know that pitch has nothing to do with it, but in my dream it did and I actually woke up thinking this would really help him (only for a second until I was really awake). It was a sweet dream...I can't remember what he was saying though, but boy, I wish I could.

Still Riding the Rollercoaster

I should know better than to think things would keep moving in the right direction. Last night Ava got pretty bad (compared to where she has been). They did a chest x-ray and found fluid built up around her lung, which in turn causes it to be very hard for her to breath. This morning they ended up putting her on a flow of 2 liters and 60% O2 and she is just barely where she needs to be in terms of her saturation. The poor baby looks so sad and scared to me when she is awake. She is just working so hard to breath. When she is sleeping she looks peaceful for the most part, so I think she can get pretty comfortable. They are going to take her down to interventional radiology and put in another chest tube today around 5:00. She will be sedated, so depending on how she reacts to that she may end back up on the ventilator. I pray that she can stay off and that if she does end up back on it they can take her back off when she wakes back up.

Nate and Kaden are going to be on their way back up tomorrow night!!! I am thinking that we might try to watch Horton Hears A Who again, we did get those passes we need to use. I have to remember to have Nate bring up the big battery...so babe, if you are reading this please bring it up ...we both know how "great" my memory is. I am so excited to see Mr. Kaden. I know this sounds funny, but every time I see him after him being gone he looks so much bigger. Nate has decided that he is going to teach Kaden how to play golf. I think that would be a great sport for him...besides that, I guess he was very interested in the golf clubs at the store. I would love to watch him play golf. Could you imagine him the size of a football player (which is how I imagine him) playing golf : )!!!

Poor Baby

My poor baby...

Little Miss Ava Rae has not had a great afternoon/evening. She ended up back on the O2's and flow. She has been pretty fussy (of course after I wrote the previous post). I left for dinner, leaving her sleeping. I came back to a very fussy baby. Her nurse was trying to calm her down but it wasn't working. We then decided that I should try holding her (although when she first gets picked up she cries). I picked her up and put her in my lap and she stopped crying. She was retracting (pulling really hard while breathing) and very pale. I put her back into her bed because her O2 sats were dropping. While in bed her sats dropped down to the mid 50's. So that is how she ended up on the oxygen and flow.

After discussing with the doctor my concerns of Ava going through withdrawls and her horrible diaper rash the doctor decided to go back up a little on the dose of the two pain/sedation meds they have been decreasing. She has been running a little bit of a temp and having very frequent watery stools. Two of the signs of withdrawls along with the retracting and high heart rate...not to mention a couple of other things. I feel soooo bad for her. I wish I could take her place. Seeing the diaper rash alone makes my heart break for her. Right now we are trying diaper doo...although I haven't seen any improvement since we started it two nights ago. Kaden went through the same thing when he was here (his was a little worse) and we did not find any solution until we went home. Once we went home his rash (more like sores) went away and haven't returned. I hope she doesn't have to wait until we get home for it to go away, I couldn't even imagine how dreadful it has to be.

Ava got her increased methadone just a little bit ago and seems to be a little more calm. She is off of the O2s but on half a liter of flow and still retracting. She is sleeping peacefully. They did draw cultures to make sure she doesn't have an infection and collected urine to make sure she did not have a bladder infection or anything. We will not have the results for 48 hours. Please continue to pray for Ava's health and comfort. Thank you.

YEAH!!!

I am so overjoyed!!! I came in this morning and Ava was off of her oxygen and her blake tubes (chest tubes) were removed. Just another step closer to going home. I can not describe how ecstatic I am. It is so nice to come in and see steps forward. I am still waiting to hear when they are going to reschedule her G-tube surgery, hopefully it will be sometime this week.

I am so ready to go home, to take Ava home and to be a whole family. My stomach has butterflies just thinking of it. I want to go back to some normalcy, just to be able to start living again. I know that sounds funny, but when you are in the hospital your life gets put on some type of hold. To know that we are one step closer makes my day!!!

I hope you all have a wonderful day!!!

I just to write this..."knock on wood."

Happy Easter

Happy Easter!!! I hope everyone has a wonderful Easter!!!

Ava is just hanging out right now. When she wakes up I will put her dress on. I can't wait...she hasn't been in a dress yet!!! I meant to bring in a headband, but I forgot it back at the RMH and I am too lazy to go and get it. Oh well. I will definately be posting pictures later...when Nate brings the wire up. Well, enjoy the day.

Leaves You With A Smile

Today did not start out very well for me, but as soon as I saw little Miss Ava Rae she put a smile on my face (how could she not, she is just too darn cute). Not much is different. She is off of the oxygen but still requires a little flow. She has also been a little on the fussy side, I think it is because they have been weaning more and more on her drugs. I have been holding her more, which she seems ok with. She is not a big fan of being picked up, but once she is on my lap or back in bed she is fine.

Yesterday the Easter Bunny came to the RMH. We actually got a picture of Kaden sitting on his lap (and he was not crying!!!). He was a little hesitant at first, but smiled the whole time. After sitting on his lap and getting an Easter basket, he couldn't get enough of the Easter Bunny. It was very cute. Kaden is going to stay home for Easter and hang out with daddy when he gets off from work, but I think the Easter Bunny is going to make another visit to the RMH and hide eggs in our room and maybe even leave an Easter basket : ). I also gave Kaden a much needed haircut yesterday morning. I was so proud of him, he did not cry...just took it like a big boy. He is growing up so fast, it kind of makes me sad but of course proud of the little guy he is growing into.

I hope you all have a wonderful Easter!!!

Daddy's on Watch

Well yesterday and today Ava has been sleeping more than usual. Amy and I don't know if Ava is resting up or coming down with something. Today Ava had an extremely busy day (Amy went home so I was hanging out with Ava). OT worked with Ava on mouth stimulation which she did not mind. The OT said her tongue is performing better. I then held Ava and she was trying to sleep but the nurse had to pull tape from her arm to replace an IV line that was leaking, Ava did not like this. A few minutes later Ava had a hearing test, she passed. Ava fell to sleep on my lap for about an hour then I left for lunch. When I got back she went downstairs for a MRI. The doctors wanted to make sure Ava's brain was not bleeding or having any problems that could occur after being on ECMO. The MRI was normal. Ava then came back to her room and the nurse said Ava's Oxygen Saturation dropped into the 40 range when she was downstairs (most people are around 97, Ava is usually around 75 to 85). I asked why she dropped and the nurse stated she was mad when they moved her, I didn't get much more of an answer. The nurse was holding a mask up to Ava's mouth and nose to provide Ava with Oxygen and flow, at this time Ava was 55 to 65. I noticed the mask did not appear to be helping with Ava's Oxygen Saturation and looked to see what the Oxygen control was on, and it was not on, just room air, 21 percent. I told the nurse she needed to turn the Oxygen up and I then turned the oxygen to 100 percent. This helped bring Ava back up around 70. Ava then got a breathing treatment, which she hates. After the breathing treatment a nurse changed the same tape on the IV line again but this was scheduled. They clean and change the tape once a week so Ava became upset again when the tape was pulled off her skin. After Ava calmed down I left to eat dinner. I returned and Ava is currently on a breathing mask with the oxygen turned up to 80 percent and flow of 7 liters. This is a big step back, lets hope it's only for a short time. Ava was scheduled for a surgery tomorrow morning around 9 a.m. for a g-tube (feeding tube in the stomach). I just talked to the doctor and asked the doctor if I can cancel the surgery and the doctor said she will pass the information on to the surgery team. Amy and I think she was scheduled for to many activities today and just worn out. The doctors said Ava does not appear to be infected with anything. They said her x-ray of her chest looked the same and that her blood work was normal. The doctor said that the sedation she recieved today before the MRI might of caused this set back. As we have experienced before their are so many unknowns with the medical field. Well lets hope tomorrow will be a better day or Amy will think she has to return to KC sooner. Daddy is trying to comfort his little girl.

Nate

As we get one step closer...this was taken a couple of days ago.

Kaden and daddy are watching cartoons.
Kaden meets Cha-Cha (I think that is it's name) from the Rainforest Cafe. They served dinner one night at the RMH. Kaden was a little nervous at first, but then couldn't get enough of him (or her).

After getting her big girl crib.

Mommy holding Ava for the first time since before surgery.

Kaden sleeping with his sister's picture. He put her on the pillow and actually fell asleep next to her. Sweet.
As I walked in to check if Kaden had fallen alseep I noticed the picture next to his face. I asked my dad and Nate if they put the picture there, but they didn't. When I went to move the picture he actually still had a hold of it. I thought it was the cutest thing. He is so sweet, I almost felt bad for moving it.
After coming off of ECMO...daddy is cheering her on.
Finally off of ECMO.


So here is the much needed picture updates. As you can tell Ava seems to be progressing quite well. She is starting to look so much older already....I know she is only 7 weeks, but I just can't believe how much she has changed already. I can so see me in her more than her daddy...but Kaden I think takes after daddy so it's only fair.

Kaden and I are home. It was actually kind of weird coming home...I kind of forgot exactly what it looked like, or something...I don't know how to explain it. It feels good being here, but I miss my baby girl already. I just can not wait for the four of us to be home together. I am so looking forward to that day. Hopefully not too much longer.

Daddy's girl

Daddy is going to stay with Ava for the next couple of days while Kaden and mommy go hang out at home. We will come back up on Thursday. I told daddy that he needs to update the blog while I am gone.

Ava is doing better today. Last night they gave her a bolus of blood and it must have done the trick. Her O2 sats are back up and her heart rate has lowered a little. She is on a small amount of O2s and a small amount of flow. They are working on weaning her off of it. She is in daddy's arms right now...well actually on his lap. She still lays on a pillow when we hold her. It's just easier since she has those darn chest tubes. Other than that things seem a little back to "normal."

Kaden got a new book from his cousin Kolton and absolutely loves it (he is a bookaholic). He is so cute...last night the two of us were talking and he pointed to my breast pump. I asked him what he wanted and he signed "baby." I said, "Oh, yes mommy gets milk for the baby." I then asked him how mommy gets the milk just to see what he would say (I know, I'm kind of crazy). He went on to pull up his shirt and point to his "boob" and then signed "milk" and then "baby." I was laughing sooooo hard and of course he continued to do it. I called my dad to tell him the story and as I was talking he began to try and pull up my shirt. I pulled it back down so he just lifted up his again. My dad goes on to say..."That is just want he needs to start doing." Oops.

Home....

Nate and I are going to trade places. He will be coming up tonight and Kaden and I will go back tomorrow. I am both excited and sad at the same time. I want to go home, but I also want to stay with my baby girl. It is too bad that I can't be in two places at once. Wouldn't that just be perfect??!!

Ava is doing fine. She is pretty fussy though. It could be because they are weaning more drugs. She is finally asleep now, and I hope that she stays that way for awhile. She has been awake pretty much all morning crying. I just hope that she can get some sleep finally. It does make me feel better that she feel asleep in my lap and seemed to like it there (they did give her some drugs, shhh), but I still think mommy's lap had something to do with it. The nurse and I were just talking about how zonked out she is right now. Since she is being weaned they tried to help her fussiness by giving her some PRNs. They started by giving her her versed, that didn't seem to help, then they gave her morphine, that seem to do a little something...well then she was due for her scheduled methadone and now she is just out of it. Her stats aren't horrible, so hopefully it will just let her get some much needed sleep.

I talked to the doctor and surgeon today about a GT-tube. Nate and I are not opposed to it. We are way too familiar with it since Kaden has one and I think I would be more uncomfortable if she were sent home with the NG-tube. The doctor said that he was 99% sure that she would need one, but they do want to try orally first. She hasn't really sucked on her binky, although she really doesn't mind that it is in her mouth. She kind of plays with it with her tongue and gnaws on it some with her gums. So we will see what she does by the end of the week and they will decided then. I just hope that after whatever they decided we will be home soon after.

Well, I hope you all have a wonder St. Patty's Day.

Baby Steps

Today the steri-strips on Ava's incision were removed. It looks good, a little part of it towards the top is not totally closed but it will heal. The nurses just have to keep it clean. She looks more and more like a baby each day. I know that might sound weird, but the more she gets rid of, the more I can look at her and see a sweet little baby. Not that I didn't think she was a sweet baby before, but everything that she was hooked up to makes you lose some of the focus on her just being a baby.

I am so thankful for the strength my babies were blessed with. I have learned so much and grown tremendously as a person just from knowing these two miracles. Looking back I would not imagine myself taking on this type of lifestyle and being, what I consider, successful. I am proud of Nate and I as parents. We could have run away, but that NEVER crossed our minds. We were faced with a "challenge" and stepped up to the plate. (Sorry if you think I am tooting my own horn.) I am happy that God trusted us enough with these two lives, with these two loves. He saw in us what I never would have and opened our eyes to it. I will admit, I sometimes doubt myself, doubt us as parents...but then I see Kaden's smile and all that he has overcome and then some...and then there is Ava's expressive eyes and known determination and I know that we have done something right!!!

Want to help???

I have met a wonderful mother who is up here with her little girl. I first found her blog through Gabi's. Her daughter Chelsea has been battling cancer. She is up here most of the time, getting occasional breaks to go home with Chelsea to her hubby and son, until the next dose of chemo. Unfortunately, somebody has to bring in the money for bills and that is her husband right now. He has to work the full 40 hour week just for them to get by. She has thought of a wonderful idea.....
Carey (Chelsea's mommy) sells Mary Kay. She figured out what it would take so her husband could take one day off of work to be at the hospital with Chelsea, holding her and providing her comfort....20 tubes of mascara. So, if she could sell 20 tubes of mascara they could afford for him to be off for a day. If you want to help you can visit her blog at www.cbranam.blogspot.com
There, she has put directions on how to order and you can read the story about her beautiful little girl and all the things their family has been faced with. Thank you.

Hanging Out

Ava is continuing to breath on her own. She is on room air (meaning no oxygen) but is on 1/2 a liter flow...just a little assistance. They are working on decreasing that today. They will start her feedings again today, trans pyloric. This is where they place the NG tube pass her stomach. She is not getting breast milk yet, but I am sure she will be happy with the formula.

So, I had taken, oh, about an hour break to comfort Ava while she was getting messed with. During that time she was taken off of the flow and no longer has the nasal cannula on her face. Getting one step closer to seeing her gorgeous face with nothing on it. I can not wait until I can just come in and pick her up without asking anyone or without worrying about those darn chest tubes. I am not as worried about the PICC line (placed in her arm) probably because Kaden had one when he was here as well. It's almost like it is just another body part on my babies ; ).

I am again just blown away at how calm of a baby Ava is. She is such a doll. She studies Nate and I as we talk to her. Last night I held her for a little while. As I talked to her she just looked at me like she knew what I was talking about. There was even one point where she smiled at me. I can not wait to just be able to take her home and care for her on our own. I know that I am particular on things, but it is driving me crazy watching somebody do things to her that I would do differently. Oh well...the same thing happens when I watch Nate do things differently!!! At least he does them...right?

Right now I think that things are moving slowly but surely. Please continue to keep her in your prayers. I know that I ask for this often, but it has been helping her get through some rough times. Thank you for all of your support...and prayers.

Sorry...

I want to apologize for leaving everyone hanging...but Ava is off of the vent and has been off since Wednesday afternoon. I didn't post because I didn't want to jinx anything and also because Nate and Kaden were down and I really haven't been on the computer much. I just caught up with all of the comments as well, Nate had already posted them. Thank you so much for all of the well wishes.

So, like I said Ava is off of the vent and seems to be tolerating it (knock on wood). She is on oxygen. I am so nervous for her. I feel bad because I continue to ask the nurses if she looks alright, if the doctors are satisfied with how she is doing, if this or that is normal for a baby her age. All of the answers have been "yes, " but I guess I have learned with Kaden that something could always change. I try and want to be positive, but I also don't want to get my hopes up. I continue to pray and thank God for all that he has carried Ava through.

Today, they looked at her vocal cords to make sure they were not paralyzed and they were fine!!!! She is also on the schedule to have an upper GI (to determine whether or not she has acid reflux) and a swallow study done probably tomorrow. She is sleeping really well today and seems to be quite comfortable. We haven't been able to hold her yet, but I am hoping that we will soon. She just needs a nurse who feels comfortable enough to let us hold her with her chest tubes in (maybe tonight??!!).

So, Nate and Kaden left again. These darn Fridays. We took Kaden to see Horton Hears A Who today and unfortunately had to leave early. Kaden did well, his battery however did not. We watched maybe 30 minutes of it. We asked a worker if she knew of any outlets in the theater. She looked but could not find one, she was really nice though and gave us 3 free passes to get in later. I do not know when we will go again, maybe next week. Nate will just have to bring down the gigantic battery that weights a ton. That should be fun to carry around, but we will do anything to make Kaden happy.

Again, I am so sorry to make everybody wait to hear what has been going on. Thank you for all of the prayers, please keep them going.

Is Today the Day???

They just put Ava on a mode where she has to do all of the breathing in hopes of taking her off of the vent today. Please keep her in your prayers as we go through this phase of getting one step closer to home. They are going to let her hang out on this mode for about an hour and do a blood gas to see how her body is tolerating it. If she does well, then they will try to extibate. My belly is in knots. I am excited that she has gotten to a point were they feel that it is worth trying again, but also scared that she may not tolerate it right now. There is always that chance too, where is she comes off she might have to go right back on. I just pray that she does well and is able to come off...it would be great for her to be off when daddy and Kaden come in tonight!!! I will keep you posted and let you know how things go as the day progresses.

A Better Day

First of all, I want to thank you ALL for the support. It never fails to amaze me how just getting on to the blog and reading the comments from all of you can make my day brighter. I want you all to know that I did talk to somebody about the nurse we had yesterday and requested not to have her again. It is kind of funny how after being with Kaden in the hospital for awhile I was able to let someone know if I wasn't comfortable with one of his nurses, even at home, I sometimes felt like I was being TOO picky. Now that I am up here again and haven't had to be picky in a long while, I think I lost my touch : ). I know that I should not worry about other people's feelings (because after all it is my baby we are talking about), I have just always been the kind of person that worries about other peoples feelings. After thinking about it and reading all of your comments I realized that I need to go with my gut feeling. I think that it has been easier to do with Kaden because I know that I know him. I think I second guess myself with Ava because she has been in this world for a little over 5 weeks and I wonder how much I really know. I am sure I sound crazy, but I can assure you that I will go with my gut instinct from now on. I now feel terrible that I allowed my feelings to get in the way of making a decision I know would have made me feel better about Ava's care. I just pray that Ava stays healthy and everything keeps moving forward after yesterday or I would so blame myself.

On another note...

Ava is doing well. We put a cute pink and brown pj outfit on her last night. She looks adorable. They weaned her a little more on her sedation med, I think she is close to being off of it and they even decreased her rate on the vent. The next step on the vent is to switch her to the mode where she has to do all of the work, but the vent is there to support that work and then hopefully she will be off. I am not counting on her to come off today, I really don't believe they are going to push her that fast. They increased one of her diuretics to help her get rid of that stubborn fluid built up in her chest and hopefully that will work soon and fast so she doesn't get too dry. Well, she is waking up right now so I will post more later.

more...

So Nate and I were talking...we might switch places for a couple of days. Nate would end up coming up here to be with Ava and I would go home. I think I just need a break or something. It just depends on how Nate's court dates work out (he's a police officer for those who don't know...not a criminal : ) ). Since he missed all of last months he is having to make them up now. I think going home for a couple of days would do me some good, at least that is what I think now.

Today, Kaden got an "ouchie" at school. Somehow or other he fell and I don't know if he hit his head or just landed on his side but either way I am sure it hurt. It makes me feel even worse that I wasn't there. I know that I would not have been at school to comfort him either, it just feels weird not to be there to pick him up from school and give him hugs.

Ok, so I might be imagining things, I started thinking that maybe the nurse put the cap back on before she laid the syringe on the bed and then took it back off before putting it in the hub of the IV, I am not sure. I will watch closely next time and say something to her if she does not do it as she is suppose to. I feel awful about my earlier post. I don't want to come off as a rude person, I just want Ava to be as healthy as possible and to stay clear from infections, especially if they can be prevented.

I am really frustrated, not at anyone, just the whole situation. I just want it to be easy. I hate crying in front of people, but today I can not hold back the tears. Just sitting in her room, by myself, the tears turn on. I just pray that the day comes soon for all FOUR of us to be home together.

The Waiting Game

We are still in the same spot as we were last night. Just waiting, and waiting, and waiting. That has to be the hardest part right now. I get really anxious each morning before I come in and see her hoping that she has lost enough fluid to start weaning her off of the vent again. But it looks like she is still puffy. I don't understand why with all that the doctors have done that the fluid won't GO AWAY. I want to go home with all of my babies. I think I have hit that mark where I can not stop thinking about home. I don't want to be here anymore...I don't want Ava to be here anymore, I want us to be home. With each day that passes I start wondering if we are even going to get to go home before her next surgery. She is already almost 6 weeks old and her next surgery will be when she is 6-8 months old. I know that may seem like a long time to others but we have already been here for over a month and who knows what will happen when she finally comes off of the vent. How long will it take for her to eat by mouth or for the doctors to decide whether she needs a g-tube (feeding tube)? I have no idea how I did this for 11 months with Kaden. I think I just got use to that life style. I was able to hold him and cuddle him and that (I am sure) made it easier. I feel selfish thinking this way, especially knowing that little Ava is the one going through the worst of it all. I just want to take her HOME where she can be cuddled and loved on. I want to be the one taking care of her and around her 24/7. It is so hard to leave her at night, I (as a mommy) have to put my trust into someone else to take care of her. I know these nurses are great (most of them), but nobody cares about a baby more than their mommy and daddy. Today my heart skipped a beat when one of the nurses gave Ava her med. She went to put it through her IV, rubbing the hub down with alcohol. When the syringe didn't fit, I asked her if that med was suppose to go into her feeding tube. Yep, it is. So she picked up the syringe that is used to flush the IV from Ava's bed and put it back into the hub without rubbing it down with alcohol. For some that might seem like a minor detail, but this is how people end up with infections in their blood. Here is my dilemma...Ava has her for the rest of the day and I am always nervous that when you mention something to the charge nurse (in this case it would probably be the other nurse assigned to Ava because the nurse I am talking about is a trainee) will the nurse taking care of her hold a grudge towards her because her mommy is a "tattletale." What do I do? I know she needs to know, but....

I feel bad complaining, I have been just a little grouchy lately. I have not been able to sleep the last couple of nights. I go to bed tired but start thinking about all of the "what ifs" of life. I hate it, no matter how hard I try not to think about them they creep into my mind. I think this hospital stay has made me start realizing things that I have been naive to lately. Never mind, I don't want to get into it.

Please continue to pray for Ava's recovery. Thank you

SO CUTE!!!

Last night Ava got a big girl's crib. Ok, so it's a cribette...but it is so darn cute, especially with her in it. This morning I came in and she was in a little sleeper. She is absolutely adorable. Her face looks like it's normal size again which makes her even cuter. You all are probably tired of hearing how cute she is, but she really is...it's true. So, again, hopefully they will be able to start weaning her this week (from the vent.) This doctor doesn't want to rush her and risk stressing her out (thank you). I just hope the doctor coming on for this coming week agrees. It's hard to argue with a doctor who does this for a living. I am sure in some of these doctor's minds they think we are crazy for even trying to tell them what we think. I mean, who has the degree, right. Don't get me wrong...the doctors here are amazing...that's why we chose for Ava to come here. I just sometimes question my thoughts, if I am being paranoid, or if what I am seeing is real. Hey, after going through everything with Kaden and now Ava, I should just go to medical school...yeah right : ).

I am missing Kaden and Nate hard core and I am excited for them to get back up here. I can't wait to take Kaden to see Horton Hears A Who. I hope he loves it so I will have a reason to buy it when it comes out. Grandpa and grandma have had some experiences with Kaden and his trach that they haven't had to do in quite awhile. Yesterday after getting him ready for the day his trach popped out so they had to put in back in. Well then last night they had to change it because of a leak in his cuff which needs to be inflated while he is sleeping or nobody will get any sleep. When it is down (as it is during the day) he can make noise around it, but at night all you hear is a freight train and then beep, beep, beep from his alarm ringing off because of the low pressure. Oh well, it is good for them : )!!! I am sure they would rather just be there for all of the loving and hugs and kisses, but they have been really good at learning all of the little things which have turned out to be very useful!!!

I hope EVERYONE has a wonderful day! Thanks for all of your wonderful support.

Guess What

Last night Ava's nurse asked me if I wanted to hold Ava...sooooooo, I did. Granted she was on top of a pillow, but hey I will take it how I get it. She slept the whole time, even during the move. However, when she had to go back to bed she woke up and stayed up for a short period of time. This little girl is sleeping like crazy the last couple of days. I think it has to do with the weaning of the drugs. Once they start weaning her from the one drugs they started her on different ones to help with withdrawls. It seems to be helping because she is zonked out. She received a little more blood today because her hemoglobin was a little low...so she is a little puffy right now. Other than that no other changes have taken place.

My Boys Left...AGAIN

Nate and Kaden left...again. I am going to start not liking Friday nights, oh starting tonight. Hopefully we will not have many more of them up here because we will all be at home. At least this this time I did not cry...YET. I do not like to cry in front of Kaden, I do not want him to think it is "bad" that he is leaving and I am staying. He was excited to go home though...that is for sure. Him and daddy are going to a benefit dance tomorrow night for one of my friend's (she is really considered family) mom. She has been battling cancer and having to fly back and forth for chemo. Her family is so supportive and doing what they can to help out. They have dinner/dance nights to raise money for her (along with other projects), I believe this is their second dance. I feel bad that I can not make it, but I will be there in spirit. I think Nate and Kaden will enjoy themselves though. They came up with a really cute name...18 Strong, Fighting For Mom (she has 18 loving, dedicated children, who will do anything for her).

It is so funny how when growing up you would never imagine anything challenging facing you. I know that my dream was to get married and have two babies. I never even imagined the "what if." I surprise myself at all that I have taken on. I'd like to say that I am proud of myself. Not only that, but I am proud of Nate too. He absolutely is an amazing daddy. He does things that I don't know if many other daddies could do. Between the stress of his job and the stress of having a child that faces challenges (let's face it, it does get stressful at times), he hangs in there. Don't get me wrong...we have our difficulties, but we get through them together. I am so thankful that I found a man who is not scared of a challenge and instead rises to them. Thank you baby, for being a wonderful daddy and supporting all of us through this. You are our ROCK!!!

On Formula

Ava was switched from breast milk to formula because there is a leak in her lymphatic system...which basically means that the fat from the breast milk is leaking into her body which probably caused a lot of the bloating. With the new chest tube in, a "milky" color liquid is coming out which is how they discovered it. It is now coming out of her other two chest tubes as well. This is why they had to stop the breast milk and start her on a new formula, which is not as "fatty" as the breast milk. This should resolve on it's own...so all of the pumping wasn't a waste of time!!! When it does resolve they will go ahead and put her back on the breast milk. They started weaning her from the sedation medicine even more, and she seems to be handling it well. So hopefully next week we can start weaning her from the vent again...it just depends on how everything else goes.

UPDATE...

Ava will most likely still be on the vent tomorrow...actually, I do not really know the plan for the vent right now...I will find out later though. Anyhow, the tube they put in this morning seems to be helping along with the med they've started. Ava doesn't look near as puffy as she did last night. Hopefully we will be working towards getting off of the vent soon, which means that hopefully everything else that is going on with her will work itself out so she can come off. Mommy wants to hold her really bad. The feeling just gets worse and worse as each day passes. I am sure she wouldn't mind getting off of her back. Her poor little head is getting flat in the back. She is going to be one spoiled little girl once she is off of the vent.

On another note, Kaden had an OT appt today to work again on oral stimulation. He did alright. He kind of threw a fit...ok, a tantrum halfway through. But he calmed himself down with the help of mommy and daddy's encouragement and finished the task asked of him. After today's appt. I am pretty sure that he has a lot of work ahead of him...but at least he can push himself through it. I am so proud of both of my babies and the strength and willpower they hold withing themselves. They are absolutely amazing in my eyes and I am soooooo proud to be their mommy!!!

Another Tube

This morning Ava got another drainage tube to help get rid of the fluid built up around her left lung. It seems to be helping...there has been a good output. She also looks a little less puffy, I guess her protein levels were low (which would make her puffy) so they started her on another med to help with that. They hope to extibate by tomorrow...we will see.

Nate and Kaden made it in last night. I really think Kaden would rather be home. Last night when we were leaving the hospital, Kaden signed home. Poor guy...but he's being such a trooper about it all. Right now he is watching his ever so loved Oswald video with the baby. Actually, he is watching it and Ava is enjoying a nap in her bed warmer. What a great big brother to "share" his favorite video with his sissy.

Weaning???

So, I came in today and they have started weaning Ava again on the vent. She had another x-ray this morning and things looked a little better. She is waiting on an ultrasound because the doctor feels that if there is a good spot to insert a chest tube to release most of the fluid built up than they will do that, I guess to get rid of it faster. They increased her feedings again to 10cc an hour. She received her potassium just a little bit ago and did not like it. The poor baby started throwing it up. I know that when Kaden use to get it, it would upset his stomach too.

So, I am getting really excited because Nate and Kaden are coming up tonight. They should be here sometime after 6pm. I don't know if I can wait that long. We decided that next week we will take Kaden to see Horton Hears A Who. He has been such a trooper through all of this that he deserves it. This will be his first experience at a movie theater. I think he will do fine, he may be a little nervous at first, but I think Nate and I can talk him out of that. We will see. I hope he enjoys it, I know he likes the book and he has seen the previews and says he wants to see it. I don't think he realizes that we will not be watching it at home. It will be fun to see how he reacts to such a large screen!!! Well, I will update more about Ava when I find out more.

Stuck

Ava has been in a good mood the last two days...knock on wood. This morning when I came in she was wide awake and alert. While I was talking to her she just looked at me as if she was interested in what I was saying. They increased her feedings to 6cc an hour and removed the dressing from her chest, leaving the staples and chest tubes. Hopefully the staples will be out by the weekend. I talked the the surgeon's nurse and she explained the fluid pockets to me a little more. She said that they will keep an eye on them via chest x-rays, in hopes that her body will get rid of them on it's own. If it looks as though they get worse then they will have to do something about it, maybe insert another chest tube. So right now we are kind of stuck until that resolves. Hopefully she will be able to be weaned from the vent when that is corrected. I think personally that if the fluid issue is resolved and her pain is managed well she will be able to come off...knock on wood. That again, is just my opinion.

Well, last night I went out to dinner with Megan and Matt (Bella's parents). It was nice to get away for awhile and talk with them. Bella was able to go home today!!! Before she left they stopped by to say good-bye and I got to see Bella smile a couple of times. It was really sweet. I wish you guys the best...Bella stay clear from the hospital!!!

A BIG Thank You

First of all, Nate and I want to thank everyone for their continued support and prayers. We feel really blessed to have such wonderful, caring people in our lives. We also feel like we are so lucky to have the most amazing support from both of our families. We have been told several times that we have so much strength, just know that we get it from our family and the love they have for us.

I want to thank everyone who was involved in the donations towards getting a laptop for us. Amy and Michael (Nate's brother and sister in-law) sent out an e-mail to everyone they knew and had those people send it out and so on, asking for assistance in purchasing a laptop for Nate and I without our knowledge. They received such a generous amount of support...some from people we have never met. With it they were able to suprise us with a laptop and accessories and then some to help with bills (which seem to be never ending). It brought me to tears. It touches my heart deeply to know that people are so willing to help. Nate and I are so grateful to all of you...words can not describe. I am at a loss of words, and I have tried and tried to figure out what to say to all of you and I can not come up anything that seems even remotely close to how we feel. We also received a donation from Gifts Of Gabi's Grace. I am sure you have all heard about Angel Gabi and her parents Micah and Jason (if not you can find a link to her blog under "Our Friends"). From Miracles Happen....Bella and her family, brought some great things for Ava as well as for Nate and I. All of you are in our hearts forever. EVERYTHING is so appreciated!!! Both of these foundations raise money from others generosity to help families during times when their child is in the hospital. As for my family...we thank you for all the help you have provided us, especially with taking care of Kaden. It means more to us than you may know. Without it we would have a terrible time adjusting our time between Kaden and Ava. We also want to thank those of you from my dad's work who donated money to us. And to Nate's dept. thank you for the gift cards and flowers. You ALL are truly a blessing and have given us hope during such a rough road. Thank you doesn't feel like enough to express our graditude, just know that it deeply touches our hearts.

THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!

More Awake Today

I came in today and Ava was wide awake and seems to be pretty calm for the most part. She was just looking around and listening to me talk to her. She is still pretty puffy. The nurse said that they did another chest x-ray and the doctor that is now on duty said that it looks like her lung as a pocket of fluid next to it. It is still up in the air exactly what they want to do about it. They may have to put another chest tube in to help get rid of the fluid. Whatever helps, I guess.
All in all she looks pretty well today. She can make some noise around her vent tube. When she cries it breaks my heart even more now because you can hear a little raspy voice behind it. She also must have been cooing or something just a little bit ago because I kept hearing her raspy little voice but she wasn't crying. And boy is she moving her arms. The poor girl must be a little weak because when she lifts her arm it starts shaking. I just want to pick her up and hold her. She looks like she is ready to play.

So I woke up early this morning with a horrible headache and decided to try and sleep it off. When I finally woke up it was still there and on top of it I had a cold sore. I HATE cold sores. Nate and I were actually just talking about them the other day and I told him since we mentioned it that I will probably get one. Sure enough, I did. I really think that it is related to stress. I either get them because of stress or being sick. I just pray that I am not catching anything. I really do not feel bad...except for the headache. Now that I have been in the room with Ava...I started getting paranoid and I am wondering if I should be wearing a mask or something. I will probably talk to the nurse and see what she thinks. I could not even imagine getting Ava sick after all that she has already been through. I just talked to the nurse and she agrees with me that it probably is related to stress. However, I have decided to wear a mask right now just to be on the safe side.

P.S I forgot to mention that they have started her feedings back up!!! She seems to be enjoying it!!!

The Chosen Mother

We got this off of Tyler's site...you can find him under the "Our Friends" link. He was born with a hypoplastic left heart and has already gone through the norwood procedure and awaiting the glenn surgery at the end of April. He is an awesome little guy...you can read about him at http://www.breuerfamily.com/

The Chosen Mothers
Most women become mothers by accident, some by choice and planning, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with a life threatening illness are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...
"Beth Armstrong, son, Patron Saint Matthew"
"Marjorie Forrest, daughter, Patron Saint Cecilia"
"Carrie Rutledge, twins, Patron Saint Gerard."
Finally, He passes a name to an angel and says, "Give her a child with cancer. "The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it. I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She will have to make it live in her world and that's not going to be easy." "But Lord, I don't think she believes in you," said the angel."No worries, I can fix that. This mother is the perfect choice. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from this child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step just ordinary. I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them." "And what about her patron saint," asks the angel with his pen poised in mid-air. God smiles and says..."A mirror will suffice." -Erma Bombeck

Sleeping...

I came in this morning and Ava looked much more comfortable. They have her pain meds still going and as the nurse said...the meds probably caught up with her, FINALLY. She woke up for a little bit, I think she just needed her diaper changed. I changed it for her and talked to her while I was doing it and she amazingly stayed pretty calm. She is not a big fan of getting her diaper changed. They started her lasix drip again...this is the med that helps her pee so she can get rid of the extra fluid she has built up (something else I mentioned to the doctor yesterday). Most likely they will not try extibating her until the end of this week, she has to get rid of all the fluid. This could be part of the reason she had such a hard time yesterday.

When I came in the nurse said that one of the surgeons (not Ava's surgeon) said that her chest x-ray from this morning looked horrible...the nurse did not know what he meant by that. I am hoping I see the doctor soon so I can ask. I am assuming that she probably has fluid built up around her lungs...at least that is what I hope because she can always pee that off. We will see.

Last night I actually slept pretty well...except for when I had to get up to pump. I called Nate early this morning and he said he had a hard time sleeping because of the lack of noise. Kaden slept at grandma and grandpa's because Nate had to work. My parents also had a hard time sleeping but because of the amount of noise. For those of you who do not know, Kaden's vent seems kind of noisy...but I guess the more you are around it the more you are use to it. I think it kind of sounds like the ocean myself : ) . I was so tired last night the lack of or the amount of noise did not bother me at all. It was kind of weird to have the whole bed to myself though.
Nate said he felt the same way. Oh well, we will all be squished again soon!!!

What A Rough Day

So, Miss Ava is not "behaving" today. She has had many brady episodes today (this is when her heart rate takes a significant drop). Her arterial line has shown that her heart is missing some beats when this happens. I have never seen her do this prior to today and we haven't really had an explanation for these episodes. It gets so hard not to know exactly what is going on, but I have to remind myself that the doctors do not know everything themselves. Hopefully she just needs to rest. It seems like since they restarted her pain meds she is more calm and happy (knock on wood). Her heart rate definitely shows it, it has come down quite a bit...from 150 to 125. Hmmmm, didn't I mention that earlier.

My two boys left today...and I as I expected, I cried and to this point continue to get teary eyed. I hate not having them here, but I know it will get easier. It did when Kaden was in the NICU. I just never thought I would have to do this again. I hate to complain, because I am really grateful for how things have been...it just gets really hard. I pray that the four of us can go home soon and be healthy, happy, and free from the hospital for awhile.

UGGGGGHHH

I am SO FRUSTRATED right now. Lets start from the begining...
Last night they began to wean Ava from the vent. She was doing well, so early this morning they switched her to a mode where she would have to do the work on her own. She handled that for about 5-6 hours and then they switched her back to let her rest. After awhile they again switched her back to the mode for her to do the work on her own in hopes of taking her off the vent today. Well, as we came back up from lunch there were quite a few people in her room. The doctor then stated that as they were about to take Ava off of the vent, her heart rate and oxygen rate dropped low. They, of course, decided to keep her on the vent. The poor baby. I am so frustrated because...first of all the nurse did not think she was ready, but the doctor continued to try. Second, they stopped all of her pain and sedation meds this morning, the poor girl continues to gag which in turn drops her heart rate. I don't understand why they would think that after only two days of having her chest closed she should feel fine. I know that I wouldn't. I can't get over the fact that her blood pressure and heart rate is higher than it has been, but that it is alright. They had stopped all pain meds in order for her to be more awake...um, hello who wants to be that awake and feel pain. I understand that she needs to be awake for her to come off of the vent, but why on earth can she not have morphine when she needs it? Nate just asked the nurse if they can give it to her again and the nurse said that she is going to. Sometimes I feel like the doctors push these kiddos so they can get them out of the bed space, especially now when they are so full. I want her to come off of the vent more than anyone, but at her own time...when she is showing she can handle it. I also want her to be as comfortable as she can be and it is driving me crazy when I bring up that I think she is in pain and I don't get any clarification or results. I did hear from the doc, that the tube is probably irritating her, I kind of figure that but what about her chest...it does have staples in it and I am sure that it is not feeling all that great.

On top of all that, Nate and Kaden are leaving early this evening. I feel like I am just going to break down and cry. I know that it will be good for all of us, Kaden will get to go home and to school and get things back to somewhat normal. Nate will get to get out of the hospital and back to work and be around some of his friends and I will not feel as torn between Kaden and Ava right now. It is going to be hard to be away from Kaden, but as I experienced a couple of weeks ago, it is easier not to feel so guilty being here at the hospital with Ava. I just want us all to be at home...I wish it was that easy. At least my mom and sister will be here tomorrow to keep me company for part of the day.

Well, enough of me venting...please pray for Ava to come off of the vent soon and for her to feel comfort. Please also pray for the guidance of the doctors so they can make decisions that will benefit Ava's recovery. Thank you.