Sept 13, 2011

Here we are in the middle of Sept. The other day marked the annivesary for September 11, the day that changed many people's lives. It's been 11 years since that fateful day. We all take for granted that our loved ones will always be here. Never thinking that something as tragic as that could happen to us. That's what I always used to think. All my babies would be healthy. I never thought that anything such as a CHD could happen to us. But the day of Haley's birth was a day that changed our lives. I really do look at life differently now. I hug my babies more, treasure the smallest moments with them, and love being with them. Each milestone, smile, giggle is a huge thing in the life of Haley. She had quite the year. We could have lost her at any time. I have been reading of so many CHD babies losing their lives to this horrible thing. Haley endured 4 open heart surgeries, 4 heart caths, a g tube surgery, a mini stroke, seizures, and many intubations. She has been such an amazing happy girl throughout it all. She has taught us so much. She is behind developmentally, but with her being sedated most of her life, in the hospital what can you expect????!!! She is home now and thriving. Growing is slow, but she is making progress. We still have tubes and a lot of progress to make, but she is here, at home with us. I am beyond thankful that she made it home to get to know her siblings, and find out what life outside the hospital is like. I think we all have those moments that change our lives, things that we never forget. I know that CHD awareness is so important to me now, because I dont want anybody to lose their child because they didnt it could happen to them, it can. I feel like Im rambling on now, so I better go.

Been awhile

I know it's been awhile since I last posted, and I cant even begin to remember where we left off.  Our life has changed once again but in a good way.  Haley had her life changing heart surgery on May 3.  It was a very scary surgery.  It was a grueling 11 hours of not being able to see her.  She came back to the room NOT on ecmo, and she was awful looking.  She had an open chest for 5 days and during that time we had ECMO nurses just in case.  She really flew through that surgery like a rockstar.  The toughest part was getting her off her breathing tube due to the fact that she had been intubated for over a month.  She finally was succesfully extubated around the first part of June.  We celebrated Haley's first birthday in the PICU and it was very special because all of her nurses came and celebrated her life with us.  It is  HUGE milestone to make it to your first birthday if you are a heart baby.  July 1 we were able to move to the 4th floor (the regular cardiac floor) and on July 19th Haley was able to come home after being in the hospital for the last six months straight.  Jeremy likes to say we were in the hospital pretty much the whole year because we basically were.  haley only had been home a week here, 2 days here, a week there.  We made it  6 whole weeks of being at home and we have enjoyed it.  We had a minor setback last week (she ended up in the hospital due to puffiness and a virus cold).  Thankfully she was only in there for 4 days and we are back home.  Now Jeremy and i are trying to really pray about what it is we are suppose to do.  We were financially blessed this last year and were able to stay with Haley the whole time.  Now that reality is back we need to find some income.  The church only gives us a limited income and we need more money to pay bills and just live.  We are not excessive spenders, but food, gas and basic bills are very costly.  We both feel that we can not get a full time job due to the fact we have to travel to KC every 2 weeks for appointments, and haley is still fragile enough to be put back in the hospital at any time.  we need jobs that we can do from home.  I am feeling the stress from it.  our bills are starting to pile up and I dont want to beg for money.  UGH we both are unsure of what the future holds for us here in Kingman, for the Church, for Haley in general and what we are supposed to be doing.  I wish God would give us a life plan for us to follow, but He doesnt.  The scripture that has been our theme is "be still and Know that I am God.  So that's what I must do. 

One more week

We have one week until Haley's big day. They scheduled it for May 3rd. It cant come fast enough for us simply for the fact that she is a sedation nightmare. We are very anxious for this surgery because she will be very sick after this just to get to a good recovery point. I know this will help her in the long run. We are relieved that it's time but also very scared. Having to send your child to the biggest surgery of her life is the hardest thing I will have to do.

I have music in my head

If I could write out the notes to the jeopardy song I would because that is the song I have playing in my head. This next week is a waiting game, and it's just a matter of time before we find out the next steps for our daughters life. It's not easy waiting, especially when there is nothing that you can do to change the future. She is truely in God's hands now. I really dont know how to pray but God, she's in YOUR hands! If they deem her ready, then I pray that she's strong, and she can handle this very serious surgery. If she's not ready then we face the trach. The trach is not the end of the world, but it certainly changes ours. I dont even know how long she would have to deal with the trach/vent, but I know the things we would have to know and learn would be even more. I think overall everything we've learned dealing with Haley has been a lot. We've learned to look for changes in her, signs that there is something different/wrong. I am very nervous and anxious as well to get it over with so we know what we're facing. Jeremy and I have been splitting up the nights at the hospital. I really hate being apart, but there are nights that she doesnt behave and it makes us feel better that one of us are here. The problem with that is we dont get the sleep we really need. So we are sleep deprived while also dealing with stress. I sometimes feel that my writing is so scrambly. So as I leave I go with this..... doo doo doo doo doo doo doo, doo doo doo doo doop, be doobedobedoo. (well ok not exactly the right notes but you get my drift ;) )

wowsie

It has been a wild crazy week (like usual). Haley is intubate again, has been since last Monday (the day after Easter). We werent able to get our family picture taken because she was on Cpap and then the breathing tube. They think her pulmonary artery is blocking part of her airway causing her to have trouble breathing. After a CT scan and a bronchogram it really didnt show that she needed a trach, but if she doesnt have her surgery soon she may possibly have one to get her there. Her cath is scheduled for next Friday April 20th. That will determine whether or not she has her surgery. Next Friday is a big day, and a very nervous one for us. As of now it's the same ol same ol. We wait. Jeremy and I have been going out a little big more just to get out. The weather has been beautiful! Next week I have to go home and get Ali to the dentist, and then the next week Joe has one too. I am so ready to be home with all 6 of us as a family!!!

Oh and this morning Haley got to be in a video. One of the night nurses won "rookie of the year" and he chose Haley as his patient for his video award. Then while we were on our walk another person came in and filmed with her too. So honoring that they chose Haley

Haley

This picture was taken last week. I love her blue eyes. She's gonna be such a beautiful gal (add those lashes in the mix and wowzer).

Callie :(

My heart is just broken right now for a family we met about a month ago. Being in the hospital (especially the PICU) you meet many different families from different walks of life. This family had a little girl that is 3 months old. She's a twin. She was born premature (of course). And she was diagnosed with Hypoplastic Left heart Syndrome. (HLHS). She had the hybrid surgery (much like Haley). When we were roommates it was very soon after her 2nd band revision surgery. She came in with the breathing tube and she apparantly hadnt ever been off it. They tried to wean her several times but wouldnt tolerate it. They took her to have a test done on her lungs to see how strong they are and she has bronchamalysia. With that she would need a trach. They were told that she wouldnt be able to receive her next surgery (the glenn) either. The family turned to St. Louis and then to Denver to await word if she would be a candidate for a heart tranplant. The family found out that they said no and there is nothing that can be done. Now they have to let nature takes it course. Without the breathing tube she cant breathe on her own. Im so sad :( That has to be so very hard.
Please Father, take away their sorrow if this baby has to die. Help them to turn to you in their time of pain.

Life is like

When Forrest Gump said "life is like a box of chocolates, you never know what you're gonna get" really couldnt sum it up better than that. Wow, with Haley our little miracle child that is totally true. We had her cath scheduled for March 26 and have been patiently waiting on the 4th floor for that. She was doing great. She got to play, listen to music, and have the attention of any nurse she wanted. Every nurse falls in love with her (can you blame them?). Last week we had the kids up here for spring break. We took them to the zoo and that's when we started to notice Noah coughing. His cough didnt get bad until Tuesday, and Wednesday he started running fevers. We kept him away from haley but apparantly that didnt work. haley got sick. She started running fevers, high temps, really worked hard on breathing. They had to do a viral culture and therefore cancelling the cath. We were brought down to the PICU the 25th and she was intubated on the 26th. So far every culture has come back negative. Not sure what the plans are now for her cath. They are treating her for pnuemonia. Antibiotics will be given for a whole 7 days. They may possibly take out the breathing tube tomorrow depending on her xrays, and how well she does. Noah's bday is next week and we need to go shopping to prepare for it. I have no clue what to even get him. I look forward to the day when we get to go home for good!!!!

Time is Ticking Away

As I recall that's an old dc talk song. Wow how memories are brought up because of a song. Lol We are still in the hospital, and will be for quite awhile, at least until through April. Haley was taken off the milrinone last Monday March 5. It is now the 10th, so 5 days off. She is doing good. The only minor problems she has is desatting when she is sleeping, but if she's on her right side she does really well. Not exactly sure why. We are up here on the 4th floor now. We have had one of our favorite nurses since being up here. She also gets to be a primary for us! We are very excited to establish that up here with some of the nurses (they have become family to us). We await her cath which is March 26. The main goal is to gain weight. It will be a relatively quiet stay (which is perfectly fine for us.). I am looking forward to bringing the kids up here. Although it is more hectic having them up here, it will be nice being all together. Trying to think of cool things to do while they are up here.

Feb 23

Really?? This month is just about over and I feel heartbroken. Right now we face the unknown. It feels like we have been asking the unknown questions for quite some time. Not knowing if we get to go home anytime soon, or are they keeping us until her surgery. I am somewhat of a planner, or I like to think I am. I like organization (even though my house doesnt show it) and I like details. Haley is always keeping us guessing. When, how, what's next? She is not like any other child. She defies the odds of this and that, and she also throws things in to the loop that no one saw coming. Her fate of coming home depends on her getting off the milrinone, and she cant do that until she is finished going crazy with her lungs. We are very relieved that she doesnt face a trach right now. She is still very fragile when it comes to her lungs though. With her we have to take one step at a time, and remind the doctors to do that as well. My SIL's birthday is just 2 days away and I need to order presents for her. This month has flown by. I am really fighting with moments of utter depression, well in my own little world it feels like that. I feel like screaming, crying, and I thank God that He still loves me in spite of my weaknesses. I cant make everything right like a mother should be able to. I cant wave a magic wand and make her instantly better. I have to trust God, in His own timing. Haley is such a miracle! I am thankful that she is stil alive, while other mothers are suffering loss. I cant even imagine the daily/constant ache they have. One thing I have learned from this whole experience is treausre the moments you have.

Last week was a scary week. Things are definetly are on the upside! She had her bronch yesterday and it all looked good. She was even extabated 2 hours later. Her xrays have looked good too! Her blood gases have looked encouraging too! Hoping to have those chest tubes out, and then we can hold her again! Cant wait for that. She has been content with her binky. I have had such mixed emotions going through this. I try and stay positive, but sometimes fear can enter in and do crazy things in my mind. I also try and push back any anger that comes in, or plain jealousy that another kids recover so much faster, they get to go home after being in the hospital such a short time. I dont begrudge them, but sometimes it's hard

Monday

Monday Febuary 20th
Her chest tubes will hopefully be coming out. Her xray looked good again, so they are going to send her down to get a bronchogram and check out her lungs. We are nervous of this, but also trusting God that everything will be ok. They are hoping to wean her off her vent and extabate her as soon as possible.

This was after her surgery but before her 2nd one in a week. Poor thing!

This was before her surgery. She is just loving Daddy's attention!

This is a picture of a Pinewood Derby car made by my cousin's husband Mike. In honor of Haley. Thought that was super sweet

The ups and downs of crazy....

I never thought that after this last surgery that we would be sitting here two weeks later still with a breathing tube and now facting the questions of what next. Haley had the band over her lung after her first surgery, and then that Monday they opened her up again and moved the band on down. We thought within a few days we would start having our little girl back. I was sure by that weekend she would be extabated (I was also bringing the kids up). Well finally on Sunday they did take the breathing tube out but she had quite the struggle. I had to go home and I stayed til Wednesday (missing Valentine's day with Jeremy and Haley). I really enjoyed my time at home but really missed my hunny and sugars. It was really hard being away from them, but it's hard being away from the others too. I feel so torn! I was going to stay through at least until Thursday to meet up with the Huffs to get the car. Monday my van broke down. My brother thought it might be the battery so he came and changed it that night. Tuesday I went with my mom to Wichita and didnt drive my van. I was feeling very bummed that day, not being able to spend "LOVE" day with my husband was really getting me down. That night though Haley was really struggling (actually evening time) they had to reintubate her. Turns out she had a numothorax (a air sac that popped). They put a chest tube in. They wanted to do a bronc on Thursday to look at her lungs to see if she needs a trac. So putting everything on hold I decided to come back sooner. I went to eat lunch with Joe at school and when I drove up there the battery light came on. My van wasnt fixed so I would have to take Jeremy's truck. I got up here that Wednesday and the wait began. Thursday rolled around after a long night (I spent the night at the hospital giving Jeremy a break). The doctors came in and said that they would not do the bronc and give Haley a break, let her heal. So we were going to wait until next week. Now it's Saturday, and we went last night to get a good night's sleep at the Ronald MCdonald house. We got a call this morning around 6 am that she had another numothorax on the other side and they had to place another chest tube. They did a CT scan and that really didnt show anything. The resident didnt think it showed any bronochmalcia, so now we have to wait until she has the broncogram. The waiting is killing me. They had a day of prayer for Haley today. Im so thankful for that! We have some amazing prayer warrior friends! I am exhausted and hopefully it wont take two weeks until I update again.

Feb 6

They took Haley back to the OR to look closer as to why she was having problems with her right lung. They did a bronchial scopel and discovered that there was obstruction and they would have to open her up. This is her 2nd heart surgery in a week. Dr O Brien took off the band that he had placed last week and moved it. Somehow it was over her airway and constricting it. She is doing much better. Her lungs look so much better. She is resting comfortably back in her PICU room and they are going to leave her on the vent for a few more days. Letting her rest is the plans!

Feb 4

Haley's lung (her right one) is collapsed, worse then yesterday. They are continuing IPV treatments and if that doesnt work then they will put a scope down her throat tomorrow to see if her lung vessel is constricted and if it's the PA band that's doing it. If so they will take her back Monday to the OR and open her back up. Please Lord, let her lungs clear up so they dont have to open her back up so quickly. :(

Surgery is DONE

They finished with the surgery. They added an additional band to help tighten the resisitance. She is back in the PICU now and we should be able to go back. Hopefully this helps her circulation to her lungs.

busy week

Feb 2
Today is Groundhog day, guess the ole Phil saw his shadow and we are supposed to have 6 more weeks of winter, only time will tell. It's been almost a whole week since I posted last, cant believe her cath was already a week ago. I went home on Sunday because the kids had dentist appointments on Jan 31, that Tuesday. I loved spending time with my other kids even though it took me away from Haley. Alasandra woke up sick that Tuesday morning so she wasnt able to go to the dentist, but I was still able to take the boys. They got a great report. No cavaties! Joe has to go back in April to get some sealants on his 6 year molars. Other than that everything is good. Jeremy called me Wednesday and told me that they had a cancellation in surgery for Thursday so they put Haley on the schedule. As long as the PICU could find a spot. (we are still PICU status but have been enjoying the life in 2 Henson). They just took her back to tighten her band. I hate having to open her up, but this is the best option for her to get her lung pressures down. Now is the waiting game :( It will take several hours.

Jan 27-

Haley did excellent through her testing yesterday. The cath showed that she still had high lung pressures on her right side so they want to tighten that band. They also are nervous about her dialated pulmonary arteries. We will probably have a date set by next Friday and then 4-6 weeks after that they want to plan on her glenn. In the meantime we will be here that whole time. YIKES. I am so not happy about spending that much time in the hospital, but if that's what we have to do to see Haley through this then that's what we have to do. She was extabated last night and woke up very happy. She's been all smiles today. It does my heart so glad to have her so happy. She has a look of pure joy just when she sees us. I love that little girl so much! I then remember that God loves her even more! I trust that she is in HIS hands and not mine. Nothing I can do can make her better. This has been a very emotional, and exhausting week. I am ready for a nap!

MRI/Cath

Haley is back getting her MRI and then her cath done right now. They took her back around 8 am and so we are just waiting in the surgery waiting room. We are anxious to hear results! Dr. Kaine thought they might possibly have to balloon her stent, and then they will take pictures and measurements. From here we should have an idea of what the next step is. They are trying to determine if they need to tighten her bands or her glenn. We got up at 5 am and so we are both very tired! I woke up scared that we had overslept, and it was only 5. I had my alarm to go of at 530. OOPS my bad! Jeremy keeps teasing that I scared him just saying "do you have your alarm set?". lol She has had some really good days. She really likes her milrinone. Everything (her oxygen sats, heartrate, breathing,) all look great!

A week of roller coasters

So Thursday night, the night I was supposed to go home but didnt we left Haley after having a very rough day. we went to sleep and around 1 am Friday morning got a call that haley was taken to the PICU and we needed to come. When we got there she was doing better after being put on milirinone, and also on CPAP. They decided to try the non invasive mask and sedation and it helped a lot. Her fever got up to 106 and she was pale and mottled. We ended up staying over the whole night and day and came to bed early. Saturday was a much better day for her. My brother Mike and his wife Steph brought the kids up to see us and Haley. She smiled for them and was so much happier. She is on blow by (because I think she kept pulling off the nose cannules.) Jeremy is over there with her now. Hopefully she's doing ok, her breathing was a little labored so hoping she calms down.

Jan something

ha ha I'm not even sure what day it is. I think it's the 20th now of January. IT's technically the 20th, got awoken around 1 am to come to the hospital. Jeremy is out calling people now to let them know she is stable. They called us to tell us that they were bringing her down to the PICU. Her heartrate was back to 200's, her temperature was 106, and her breathing had increased. She is having help with the non-invasive mask. Her heartrate is back down to 140's and her blood pressure is good. They said that she was very pale, and mottling, (marbling looking skin). They have given her sedation meds to relax her. I think they are going to do another ECHO later today. I will not be able to go home to get the kids, it's so hard for them to be in the PICU, and hard to see her like this. She is finally getting some much needed sleep!

Recap of what's been goin on the last few days: Haley hasnt slept since Monday. She slept Monday night but since then only slept a few hours here and there. Temps off and on, and very irritable. It is now Friday (officially in the wee hours of the morning). Thursday she was given some doses of morphine and that would help calm her down, but not really sleeping. They also decided to start a med to help calm her brain down. She was given one dose of that, but said it would be several doses before we would know if it really worked. The morphine dose given around midnight apparently make her have to have more oxygen and her breathing still was increased and her heartrate was still high so they brought us to the PICU.

Yesterday was January 16. Wanted to give the latest update. Haley had a very scary day. She kept getting very fussy and turning purple. We almost thought we would have to go down to the PICU again. After 3 episodes they were on the phone with the doctors in the PICU but they said the only thing different they would do is start her on milrinone. They needed to get an IV in, a PIC line actually, to be able to draw labs as well. She needs one because she's such a hard stick! They were successful in getting the pic line in her right lef, and they gave her some pain meds. They went up on her dose of captorpil and that really seems to helpl She had a good night and a much better day.

January 13

Support Baby Haley Brooke Manthe and her little "big heart"
January 12-13 Haley got extabated last night, (the breathing tube came out) right away her heart rate went up, and she started working harder to breathe. Her secretions doubled, and they kept suctioning her out. The Dr decided to try noninvasive support and she had a mask put on. She also was given some sedation to help tolerate the mask because as feisty as she is she just plain didnt like it. This morning we walked on and she had the nose cannules in. She is doing much better. She has a touch of pnuemonia and so much secretions in her. They are suctioning her quite a bit! They are going to turn off her milirinone tomorrow and have started her home heart meds already. She is still not the same Haley, but she is getting there. She is also running a fever again so not sure what that is from. They have talked to moving her to the 4th floor tomorrow, but I dont think that will happen yet. She still needs a little TLC from the PICU. OH and before I forget they talked about her at conference this morning. They have decided to do another cardiac cath to reassess things going on. Again discussing which surgery they should do (retightening of the bands or go ahead with the glenn.) Not sure when that will happen, no date has been set.

What a week

I can absolutely say that this ride has been one giant rollercoaster of emotions. We think Haley is fine then BAM she gets hit with something else. I know she has major surgeries ahead of her, I dont like to think too much on that because I'm nervous. I know she will be ok, I have to believe and have faith that GOd will see her through, I just dont want to see my baby in any pain, to see her chest opened up. We all got sick the Tuesday after Christmas with the stomach bug. Eventually by the weekened case Haley had gotten it too. She is such a fragile case that anything can affect her. She got dehydrated pretty quickly. We ended up in the hospital on Tuesday Jan 3. They gave her some fluid bolus, and upped her feeds and then by Sunday she was looking pretty good that she was ready to go home. The only thing that ever is questionable is her lovanox level. We had a really good Monday! By Tuesday she got irritable, started running a low grade fever, and started breathing heavier. We decided it was probably necessary to take her to the hospital. I hate coming here, I love the people, but being so far from home and being away from my kids is the hardest. But it was the right choice regarding Haley.

Here is the post I had on facebook.
JAN 11 2012 Haley was admitted to the hospital around 7. She kept progressively getting worse with her breathing. After her heartrate went up to the 230's (not good). They took her down to the PICU where we sat until 3 am only receiving tidbits of what was happening. A nurse came out several times to update us.... They got several iv lines in her and put in a breathing tube. The scary part was the unknown. The nurse had told us they had called svc surgery in. (We begin thinking oh no, she needs surgery). Then also to warn us the word Ecmo was a possibility. (Our hearts sank- was our daughter so much more serious then what we even thought). When the attending dr came out she said that Haley handled everything great. Theey were very worried she was going into cardiac arrest. She came out stable after receiving fluids & blood. She also had a fever of 105 but that also dropped down again. Her bnp is fine and her blood gases look way better then expected. Her echo done today showed a narrowing in her stent in her PDA. That will be ballooned later in the cath lab. Right now she is fighting an infection found from her breathing tube secretions, shes on antibiotics for that. THANK YOU for all the prayers being said on her behalf. We are both exhausted and need to go shower and take a nap.


January 12-Haley is still intubated, her blood gases look much better, and she is slowly getting better. Since she is on the breathing tube she is very well sedated, otherwise she tries to pull it out. She is very feisty and that is to her advantage.

Haley getting to play in her crib at the hospital Haley giving a big awww smile

This was one of the bows someone gave her at the hospital

All set to leave the hospital on January 8

New Routine

We got to go home December 24, by a very short margin. Haley had to have her blood tested to see if her lovonox levels were therapeutic and they were. The residents had a big smile on their faces when they came and told us. We had a very enjoyable Christmas, Anniversary and New Year's all spent at home. We were enjoying it very much. January 3 we went to the doctor and she had been losing weight. (We all were sick the previous week with a stomach bug). She got the GI bug but it stays with her so much longer. We went to the hospital on that Tuesday. The doctors then on Wednesday kept talking whether or not surgery should happen sooner. I had to go home on Thursday because Ali had an eye appt on Friday, and when I got to call Jeremy he told me not to bring the kids up because they were talking discharge. We got to go home Sunday Jan 8. I think that is the shortest hospital visit we have ever had! YEAH Now we are really looking forward to time at home. Please Lord let me it be much longer than ever before.