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.