Archive | July, 2009

55 and counting

55. Total of 55 cc’s out of her chest tube yesterday. Better than 80, but still a little bit to go. Nicole, our nurse today, is giving Gabi a bath and she called me to ask if we had any clothes at the hospital for her!  So cute. We can cut holes in the jammies for the chest tubes and her IV in her foot or use ones with plenty of snaps. She is getting there. Slowly, slowly slowly.

Carsyn is doing well too. You can see her progress at caringbridge.org and visit website babybuchmann. We are starting to see other Norwood babies pass Gabrielle in their progress and some are planning their trips home already. So happy for them but really stings knowing that we will most certainly celebrate Gabrielle’s 2 month birthday in the hospital. That green monster can get at the best of us. On the other hand, some families had to say good-bye before their children ever got to come home at all. It’s all perspective and appreciating our children while we are together.

Love,
Teri

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I am going to kink those tubes.

Total drainage yesterday was 80 cc’s. So far today, she is at 30…about the same as yesterday. yawn. Nothing is happening. At least she is stable and I am able to hold her!

I just got home and am cleaning out my fridge and emptying the dishwasher. I realize that we have not returned any tupperware from all the incredibly generous dinners we received…not to mention thank you cards. I will get to the thank you cards, but really, if you need your tupperware back, please feel free to come on over and go through my cabinets. We keep them in the middle drawer under the microwave.

Love to all-
Teri

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Wednesday update

Gabrielle was wide awake this morning. While she was getting her physical therapy, I asked the PT and now my friend jenni, if babies actually smile for the first time in the hospital. Surprisingly, she said yes. One of the nurses said she got Gabi to smile and I was so happy to hear that.  I was  so happy to hear that she could find some happiness in her life right now. I haven’t seen a smile yet, but she certainly was content this morning. Besides, Ethan Jr. didn’t smile until he was almost 8 weeks…he is a bit intense.

Her total output from her chest tube was 90 yesterday. I picked her up quite a bit yesterday…and yes, I can actually get her in and out of bed by myself  now!  But moving her around more than usual causes the fluid to dump. The docs didn’t change much today. Weaning her down on the valium and methodone still, but other than that it is just a holding pattern waiting for that drainage to stop.

Carsyn is doing great!  I still can’t believe they went from several months of just a holding pattern and now they are already talking about closing her chest possibly today or tomorrow. So amazing! They said her recovery should be about 6-8 weeks. So, we are planning on going home on the same day. I hope Dr. Nancy is OK with that. I see Nancy smile from across the unit and I swear she is thrilled that little Carsyn and Gabrielle are seperated. Or maybe it’s because the parents cause trouble :) and she is happy to have us seperated.

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Echo results

The docs did an Echo on Gabi’s heart yesterday and they went through the results with me today. Her heart looks the same. Not awesome, but not terrible. She has some leakage in her tricuspid valve. This is the valve that is between her combined atriums and her right ventricle. The blood pumps from her atrium through to the ventricle and then out to the body. When there is leakage, the blood tends to go backwards back up into the atrium, kind of like backwash. This makes the heart work very hard and get very tired. The right side of the heart is not meant to be the pumping chamber, so it is working hard anyway and then the leakage on top of her reconstruction makes it that much more difficult. They have seen this leakage get better, stay the same and get worse. They just need to watch it very closely.

The cardiologist also explained to me all the meds she is on and what exactly they do. Captopril helps the heart relax enough allowing it to fill with blood, digoxin helps strengthen the muscle. Lovanox is like heperin which is a blood thinner to avoid any clotting. She is still on diazapin and methodone, although they are weaning these off slowly.

Her output is at 80 cc’s for total yesterday and today so far is at 40 starting at 6 am and it is 3:30 pm, so it is halfway through the day and she is about the same as yesterday. We are waiting patiently.

When I got here, I was running into the entrance, passed by room 308 where a little girl named Praise has been cared for since we have been here and there was another child there. Praise went home to Jesus this past week and to see her room occupied by another heart patient made me very sad. I continue to pray for her family. I quickly checked on Gabi, gave her a quick kiss, and ran down to Carsyn’s new room. She is on the transplant side of the unit, so she is now down the hall from us. I got to hug her mom and see little Carsyn through the window. She is doing awesome. Her O2 was at 100%!!!  She is doing great!  Chris and Michelle were about at their breaking point and God showed his mercy and grace to that family.

Thanks for all of the continued prayers and support everyone.

Love,

Teri

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Carsyn news

Gabi is doing just fine. Nothing new.

Carsyn, Gabi’s neighbor and friend…. GOT A HEART!  I am so excited for them.  At 3:55 am, Carsyn’s heart was on it’s way to Childrens.  She is still in the OR at 7:55 am right now with about 2 hours to go, but so far so good.  Please say a prayer for them today. She will have a long fight of recovery ahead.  You can follow their progress at caringbridge.org and then search for their website at babybuchmann and then go to the journal link. I am just beside myself right now.

Love,
Teri

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Monday update

Gabrielle had a good weekend. The biggest news is that she is completely off any oxygen…she is on room air!

They continue to wean her methadone and diazipan (valium) down each day. But she remains comfortable. The drainage from her chest tubes gets better every day, but is still above 150 cc’s each day. So, we continue to wait for the drainage to stop. They are going to do an Echo today to make sure her cardiac output is sufficient. This may be contributing to the large amount of drainage. They want to exhaust every other possibilty before they do the pleuralodesis procedure.

We got to hold her this weekend a whole lot. She certainly does not like transitioning back to her bed, but she enjoys being held very much. She is so weak and sore that I think it hurts her to be moved so much. It’s so wonderful to be able to hold her!

We went to baby John and Charlie’s baptism yesterday at the Dominguez’s. It was great to see our friends and welcome their children into the Catholic church. We love you guys!

We got home last night and realized it was already Monday the next morning and another week of traveling is in front of us.  We are on day 49 of being in the hospital. We are exhausted, but we will keep going. We are trusting in God and putting one foot in front of the other. I know He and all of the prayers out there are carrying us through this.

Please continue to add Carsyn to your prayer list. She is on day 48 for waiting for her heart. There has been a lot of pain on the unit these past few days. A few families had to give their children back to Jesus and many more surgeries and little kiddos are being admitted.We are so blessed that Gabi is improving, even  though she is deciding to putz right along.

A few pics from the weekend.

Love,

Teri

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I jinxed it

Every time I get a glimpse of something hopeful, I get punched in the gut. They took her out of the crib and put her back in the high ECMO bed…just in case. Dr. Nancy didn’t think she was stable enough to be in a regular crib. Putting her in that crib was a sign of hope, it was a sign that she was doing well…I know she is doing OK, but I am so disappointed.

They put in her peripheral IV today. She needed a blood tranfusion. Her output is still in the 200’s.

Tough week…but tomorrow is another day.

Love,

Teri

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Nothing new

Except a new crib!!  The nurse asked the docs if Gabi could get a new crib and they approved. She looks like a tiny little peanut in her new crib.  I forgot my camera during the week, so I will take some pics tonight.

Nothing is new really, we are just waiting for that drainage out of her chest tube to subside. The past 2 days have still been above 200 cc’s.  They are weaning her methodone (treatment for withdrawal) and diazapan (valium) down every day, so she will be less and less sleepy.

Love,

Teri

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left pleural cavity

So, Gabrielle is doing OK. I have had 3 docs explain to me what is happening with this chest tube drainage from her left plueral space. Still, I could not understand it. Finally, a PA described it to me and I think I understand now.

So, the lymphodes near her left lung were damaged. A few weeks ago, when they tried to feed her breastmilk through her ng tube, lots of this milky substance leaked out into her drainage tubes, called chylous. They explained to me that the fat that we eat goes through the lymphatic system and because those particular lymphodes near her left lung were damaged, they leak out the fat. So, they have now tried the special formula where the fat is already broken down for her. Her stomach is tolerating it just fine, but her lymphodes are leaking tremendously into that left pleural cavity and then draining out the tubes. It is not the chylous stuff, it is just regular clearish fluid. They measure the amount of drainage and she was down to about 20 cc’s a day but then 2 days ago, the total amount of output was 270 cc’s. Yesterday the total out was 190 cc’s since they stopped the feeds. So, we are going in the right direction.

 She is NPO (nothing per oral), meaning no feeds into her stomach. The plan is to dry her out completely, which could take days or weeks. They need that drainage to measure under 10 cc’s a day. Then we wait for another 4-5 days while she is dry for that chest cavity to close up and heal. The lymphodes will not heal up by then, but the cavity should close up without all that fluid in there. When the cavity closes, the fluid has no where to leak out forcing the fatty fluids to stay within the lymphatic system.

If and when they try to feed her after giving it time to heal up and it still leaks out, then they will ahve to perform a surgical procedure called pleurodesis. This involves injecing antibodies into that chest cavity causing it to become “sticky” so that the lung will stick to the chest wall like it is supposed to. This will force the fluid to stay within the lympatic system. Phew. i hope that made sense.

This is a setback that could be months.  I am so disappointed, but I know it is not the end of the world and I know she will get through this. I was REALLY hoping she would be home by the time school starts. Little Ethan starts first grade and Thomas starts pre-school. Balancing being here and being there is going to be a tremendous challenge. And not to mention my mom and sister have to go back to work after summer is over…I really have no idea what we are going to do.  I can hear you all saying it to me…one day at a a time. It’s just a mother’s anxiety at work here.

Love,

Teri

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Tuesday update

She is staying strong but today we had a bit of a setback. The drainage from her chest tube increased yesterday by 100 cc’s. The docs are contributing this to the feeds of the formula she is on. They have stopped her feeds and have to wait until the lymphodes that are leaking heal. THis could be days, weeks…months. It is not the end of the world, but certainly a setback. She will not be able to feed until that left pleural chest tube comes out. She continues on with the TPN and lipids for nutrition. Disappointing, but at least her life isn’t threatened.

She is still on methadone and valium, so she is comfortable.

I can’t send out emails at the hospital and I wanted to know if  Michelle A. had the baby yet?  I am sure Ethan will find out at Tee ball tonight from your hubbie, but I wanted to let you know I am thinking of you too.

Love,

Teri

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no IV!

They don’t need to  give her another IV.  I am so relieved. They have replaced the heparin with another drug called lovanox, which is an injection into her thigh once a day. Both the drugs are anti-coagulants that she will need her entire life. When she goes home, she will be on aspirin.

So they now can infuse the lipids into her PIC line along with the TPN and those 2 are the only ones bring infused introveneously. She is resting comfortably and having another great day.

Love,
Teri

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Monday Rounds

The docs rounded on her finally. They have discontinued 2 of her 3 antibiotics. They are going to stop the vancomycin and the sephapim (sp?). They will keep the fluconazol, which is an anti fungal. Her temperature has been maintaining at a normal reading. Her white blood count is a little low, but not so much to be alarmed. Everything just needs to be watched.

They are going to try and keep the milrinone drip off and see how she responds. The drug takes 6-12 hours for its effect to wear off and it has been about 12 hours, so they are going to see how she tolerates being off that heart med.Her blood pressure is at 69/41 with a mean of 52 and her heart rate is at 137!!  Awesome numbers.

The only procedure scheduled for today is to try for that peripheral IV again. Dr. Neibler, one of the critical care attendings is going to try. She has not received any lipids for about a week. The lipids are the fat she needs to provide calories. She is getting some through the formula trophic feeds, but not enough. The lipids cannot be mixed with the meds and they take a long time to infuse, so they cannot use the PIC line that is in her foot. So, it’s an access problem. If Dr. Neibler cannot an IV in, then they will have to up her feeds faster than average. Last time they tried for an IV, it was terrible. It is hard enough to get a line into an infant, but an infant with a heart defect is even more difficult because their little veins are even smaller than normal. To watch her get poked and stuck over and over is heart breaking. She cries, screams, then begins to wail and eventually, she just surrenders and lays there staring at the ceiling while they do what they need to do. I hold her hand and tell her she is doing great. She is tough…I know she can take it.

I know that all of this suffering that she is enduring is bringing her closer to Jesus. It is difficult for us to understand, but then again, we are not supposed to understand all of this.

“For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too” 2 Corinthians 1:5

She is my tough little girl.

Love,
Teri

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Monday morning update

She had a good night. The nurses gave Gabi her scheduled doses of captopril and methodone last night and for some reason her blood pressure dropped to 53/19 with a mean of 29. They gave her some albumin and turned off her milrinone drip to raise that up a bit and it did work throughout the night. She is now at a  mean of 41, which still isn’t great, but much better. The goal is to get her off that milrinone drip anyway so we’ll see if the docs want to turn that back on or just leave it off and see how she does. Her feeds are still on at 5 ml/hour and so far all the cultures have come back negative from her fever spikes. This is great and they are contributing those fevers due to withdrawal symptoms. They upped her methodone dose on Saturday and that has helped her to be really comfortable.

On Friday when I got to the hospital, the fever was just starting to rise and the nurse was a little concerned, within an hour, there were 2 docs, a PA and our 2 nurses putting ice  on her body and trying to calm her down. They had the pacemaker on her bed ready for them to use to lower her heart rate. Scary stuff. But since then, she is doing much better.

We pressed the nurse this weekend for a time frame and she guessed Gabi could be going home in about a month. How exciting is that!!  The next big step is getting that last chest tube out, getting her off the oxygen and getting her to eat. Hopefully we will find out for sure about her vocal cords in the next few days. To me, her voice seems stronger everyday, but she still sounds a little breathy and gaspy, so we’ll see.

My friend AnneMarie and her daughter Marybeth came to meet Gabielle on Saturday.  It was so great to see them. And they brought with them 2 bags of collected gifts and cards from my Holy Angels friends.  Thank you all so much for your thoughtfulness. You all continue to inspire me and lift me up during all of this. I miss you guys.

I really tried to get a new family picture this weekend, but it just didn’t work out. Marissa got stung by a bumblebee, so she wasn’t in the mood. Here are a few pictures I did get.

Marissa post bee sting

Marissa post bee sting

Ethan visiting with his baby sister

Ethan visiting with his baby sister

Dad and Thomas holding Gabrielle's hand

Dad and Thomas holding Gabrielle's hand

Brothers

Brothers

The bow was from Carsyn's parents...so cute.

The bow was from Carsyn's parents...so cute.

Swaddled up like a regular baby.

Swaddled up like a regular baby.

The next few pictures are from the Ronald McDonald House. They got balloons from this restaurant in town and were allowed to play in their underpants. Life doesn’t get much better for them.

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This is Gabrielle's monitor with all of her numbers that we stare at all day. Look at that heart rate!  144!! Lowest it has ever been.

This is Gabrielle's monitor with all of her numbers that we stare at all day. Look at that heart rate! 144!! Lowest it has ever been.

Thanks for all the love and support everyone.

Love,

Teri

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Weekend Update

It’s amazing how difficult it can be just to get to a computer her. She is doing great!  Last week was really scary with the heart rate peaks and the fast breathing, but she is stable and doing awesome now. Friday night when we got into town was a horrible night. I was here until midnight and there were doctors racing in and out of the room. She had a fever of 38.6 degrees celcius and her heart rate was again up to 220. They needed to get a blood culture and had to have 3 different people to get the sample. We have not gotten the results of those cultures back yet, but so far nothing has grown.

Good news today is that she is back on her trophic feeds of Enfaport at 5 ml/hour. They took out her middle chest tube so she is down to just one, the left pleural tube.  Yeah!  She is swaddled up like a regular baby!  EThan and I have both held her a couple of times now. It is just great.

We are headed home and I will post more details later. 

Love,
Teri

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Plans for today

The docs made some changes with her today. We are scheduled to chat with either Nacny or one of the fellows to get a general assessment of how she is doing. They are starting trophic feeds with a formula called Enfaport, starting at just 3 cc’s/hour to get her belly going again. They discontinued all of her diaretics until further notice. She is quite dehydrated and that can contribute to her high heart rate. They are also giving her a blood tranfusion to give her vascular system more volume and that should really help her heart. She is still hanging around 185. Her oxygen is back on the high flow at 30% oxygen. She was at 100% oxygen and a lower flow, but Gabi needs more pressure with the high flow and less oxygen. Her O2 says remain at about 92. This can vary so much with the babies. They have discontinued the digoxin for now but she is still on milrinone and captopril for her heart. I think that is all the changes for now.  And now we wait to see how she responds.

She is comfortable and sleeping right now. Thank goodness. The withdrawal tends to keep her wide awake, and she needs sleep in order to heal, plus babies need sleep.

Ethan Jr has been busy packing up all morning to head to Milwaukee. Which that means the entire house is torn apart because he feels he needs to bring EVERYTHING. We are all very excited to see her.

Love,
Teri

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Heart rate peak

Gabi is stable. My mom was there all day yesterday and into the night and Gabi’s heart rate at one point peaked to 230. She had 2 docs and a fellow and several nurses by her bedside trying to calm her down. The floor has been so busy with so many sick kids maybe this was Gabi’s way of saying…hey what about me?  She was started on 2 new heart meds yesterday, digoxin and captopril that may have caused this…but the docs doubt that is why. (Thanks to my heart moms, I guess these are 2 meds she will go home with and continue with until future surgeries). Sometimes there just isn’t a reason for these episodes. They gave her a med called adenosine to get that rate down and it did after an hour or so. The docs explained that as long as the heart is able to calm down and it doesn’t stay above 200 for too long, then this isn’t dangerous. Of course, it is alarming, but at least she is able to calm down. They continue to give her morphine and midazolam to keep her calm and relaxed.

Her chest drainage is way down…I think total for yesterday was around 80 cc’s. So that is great. They continue to tweek her oxygen levels and all of her meds, for pain control and control of her sats. I feel a little better today, a much more positive attitude. I think hearing from so many of my heart mom friends knowing that we are not alone and that kids do pull through this is so encouraging. we are headed up there later today and I will get to see her, so I know that helps too.

And I shouldn’t be complaining, the unit is crazy with so many sick kids and there are so many families that are worse off than Gabi.  It’s all about perspective.

We’ll see what the docs say at rounds.

Love,

Teri

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Confused

I know Gabrielle is getting better but I am just confused. It just seems like one big step and then 5 steps backward.  She is breathing really fast at a respiratory rate of over 70 breaths per minute. her heart rate stays at about 175 and ranges from 160-210.  These are so nerve racking to me. Her o2 levels are too high for her, hanging at around 92%, which means that the O2 is not perfusing through her body well. I am trying to understand everything they tell me, but I am just so confused. She has been on Milrinone, a positive inotrope, to strengthen her heart. And they took that dosage drip down from .5 ml an hour to .25 ml an hour yesterday. But then they added Captopril last night, an oral med (that of course, she threw up) and now on rounds they just added another heart med called digoxin.

They are lowering her O2 amount that flows into her cannula through her nose, but then her lung pockets keep collapsing too. I just don’t understand. Every time there is a new milestone, there are so many other obstacles that make my head spin. And the docs are awesome but they come in for their 45 second evaluations and then are on their way before I even have time to process what they said and form my questions.Then I have to ask to see the doc again and wait another few hours…

Speech came by already today and they  just worked with her on her pacifier dipping it into her breastmilk. The nurse said she tolerated it just fine. They are still giving her a little bit of time before they can really evaluate the damage, if any, done to her vocal cords.

I am just having a frustrating day…and it’s so hard not being able to be there. Thankfully, my mom is there today and can be Gabi’s advocate for her.

Love,

Teri

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Pictures

For Thursday morning, she had a rough night. Just really uncomfortable. They finally gave her a dose of methodone for the treatment of her withdrawal symptoms and then she got a dose of ativan for her anxiety. She is sleeping comfortably now. We’ll see what they say on rounds.

Here are several pictures from the past few days.

Afterthey extabated her. You can see her face!! Notice no ng tube. She didn't like that either and decided to just pull it out.

Afterthey extabated her. You can see her face!! Notice no ng tube. She didn't like that either and decided to just pull it out.

They replaced the ng tube.  She looks so much more comfortable without the breathing tube.

They replaced the ng tube. She looks so much more comfortable without the breathing tube.

Holding her for the first time in a month!

Holding her for the first time in a month!

So happy!

So happy!

The nurse and speech getting ready for her first speech consult

The nurse and speech getting ready for her first speech consult

The speech therapist holding her..."who do you think you are lady?" Her heart rate was up to about 200 at this point.

The speech therapist holding her..."who do you think you are lady?" Her heart rate was up to about 200 at this point.

Speech trying the bottle for the first time in her life. She is not quite sure and her heart rate was up to about 215 at this point.

Speech trying the bottle for the first time in her life. She is not quite sure and her heart rate was up to about 215 at this point.

This is not working.  Heart rate increased to 225...time to put her back in bed.

This is not working. Heart rate increased to 225...time to put her back in bed.

This is her room. Look at how many machines are gone!  I know it sill looks like a lot of equipment, but she is down to about half.

This is her room. Look at how many machines are gone! I know it sill looks like a lot of equipment, but she is down to about half.

That is me trying the pacifier. She actually liked it despite the indignant look on her face.

That is me trying the pacifier. She actually liked it despite the indignant look on her face.

Love,

Teri

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One month post-op

I GOT TO HOLD HER THIS MORNING!!!! It was awesome. They put her on a pillow and had to pin all of her lines down but I rocked her in my arms for over 2 hours.  Her heart rate was fairly high all morning, at about 185, but when I was holding her it got down to 149.  She just stared at me wondering what was going on.

I can’t believe her surgery was one month ago today. Seems like yesterday but also a million years ago. She had kind of a crabby morning, but they thought she was quite a bit dehydrated, her soft spot was completely sunken in. So, they got rid of one dose of a diaretic and cut her lasix dose in half.

They weaned her oxygen flow down this morning from 6 to 4 and this afternoon they changed her settings from this high flow oxygen to a regular cannula oxygen. She is breathing really fast in my opinion, but apparently that is normal. Her respiratory rate is hanging around 65 breaths per minute.

The big change today was the docs ordered a speech consult. Now that she is extabated, they need to work on her oral skills. She has lost the natural sucking reflex but I guess she can re-learn that skill. I was so excited for this speech time because we can learn if her vocal cords were damaged or how quickly she will catch on to feeding. To say the least, it was a disaster. The speech therapist picked her up in the same fashion as i had, with the pillow. From the moment Gabi hit her lap, she was totally stressed out. The speech therapist tried the pacifier but Gabi wanted nothing to do with it and it just escalated from there. Her heart rate soared to 225 and her renal sats dropped into their 20’s. We tried to calm her down for about 10 minutes but had to put her back into bed. It took over an hour and a hefty dose of morphine to get that heart rate down even to stay below 200. I guess she wasn’t ready for that. The doc said she had a lot going on right now just trying to breathe and get off of all the narcotics she has been on. Poor thing just got pushed too far. She has recovered nicely and is doing fine now.

By tonight, she actually did suck on the pacifier for me, so that is great progress. They may try and just feed  her through her ng tube just to get her started on some nutrition.

So the next big milestone is getting those chest tubes out and getting her to start feeding and getting more mobile. It breaks my heart even more now leaving her here.  But she is so strong and such an unbelievable fighter. These little heart babies are all so amazing. It was hard today getting so excited to see her actually eat on her own and then it crashed down hard, but we are celebrating every milestone and I know she’ll get there soon enough.

Of course I took a whole bunch of pictures…I will post them tomorrow when I am home.

Love,

Teri

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Night cap

Gabrielle is doing great. Her Respiratory rate has calmed and she no longer is heaving for breaths. There is a little retraction but not like this morning. Her O2 sats are in the upper 80’s and lower 90’s, which is right where they want them.

They replaced the ng tube for her meds and she really didn’t like that, but it had to be done. Her fluid output is getting better each day. Total for today so far is around 100 cc’s.  I am so tired, I feel like I could collapse. Being here at the hospital is very emotional. When your child has a good day, there is always someone down the hall that is having a really rough day. There are still 2 babies on ECMO and there was a couple surgeries happening today. You can’t help but care for those kids and want to reach out to the parents in the adjoining rooms.

Speaking of adjoing rooms…Gabi’s sano sister, Carsyn in the next room over from us is waiting for a heart. I know she will get one on God’s timing and then it will be one surgery for her and she will be heart healthy!  The prayers everyone is offering up for Gabi are working, so if you could add little Carsyn and her family to your parents, I know God is listening and I know her parents would appreciate it.

Now that Gabi is totally alert and off all of her drugs, it is even harder to leave her, even just to run out to get some lunch. But we will make due…and she is doing so awesome, we can actually see a light at the end of this tunnel!

I have received all of your comments, emails, voicemails…thank you all for your support and prayers.  As I have said before, they are carrying us through this. 

Love,

Teri

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Hour by hour

We had a bit of a scare for a little bit but she is doing better now. She was on this CPAP oxygen mask that provided not only oxygen but also quite a bit of pressure pushing it into her lungs. Last night, she was not tolerating that at all, so Nancy put her on just regular hyperflow oxygen. She was much better with that. Her flow rate was set at 6 (not sure of the units) and her oxygen percentage was set at 30%. They all decided to start to turn that down at rounds today. The nurses changed her flow rate to 3 and she almost immediatly freaked out. Her heart rate skyrocketed to over 200, she looked more pasty and pale then normal, and her chest was heaving in for breaths. She wasn’t crying, but she looked distressed. The nurses wanted to give her a minute, but I insisted they call the doc. The fellow came in and then called the cardiologist and Nancy. They turned back up the rate to 6 but still her chest was heaving and her heart rate was hanging at about 198. They called for a chest x-ray stat and from that they could tell that pockets of her lungs had collapsed from dropping that pressure too quickly. Slowly, slowly, she is recovering from this episode, she is still heaving a bit, but certainly not as much. She will be able to push out those collapsed pockets hopefully on her own. They may have to try the CPAP again if she can’t do that on her own. Her heart rate is down to about 175 now and her color looks better. Her oxygen sats got down to about 80%, which actually for these Hyploplast kids isn’t that low.

So, her oxygen sats are a peculiar number to me. It has taken me a while to fully understand this. A normal person has 100% oxygen sats when they are healthy. I remember taking Thomas to the hospital a few years ago for RSV and his oxygen levels fell into the low 90’s so they admitted him. But for Gabi, her oxygenated and de-oxgenated blood is mixed, so it is a fine science of getting the right amount of oxygenated blood to her lungs and to the rest of her body. So, the SPO2 number that is on her monitor specifying her oxygen sats should be around 85%. After her next surgery in a few months, that number should be more in the 90’s. (Any hypoplst parents reading this, feel free to correct me). Gabi’s number is hanging in the low 90’s, whcih is actually too high for her. That means that too much oxygenated blood is going to her lungs and could cause a “wet lung” or fluid build up, which would not be good. Nancy also said Gabi has a sizeable sano (the shunt in the heart) and that could cause too much blood to go to her lungs. This totally freaked me out…I thought she was telling me that they put in a shunt that was too big for her. Not the case. She will grow into the shunt and when the oxgen assistance is turned off, her sats will be in the right place. Needless to say, she needs to gain weight now and they are watching that number very closely.

It is so unbelieveably awesome to be able to hear her from across the room. Just the little gurgle noises and of course the gagging she’s got going on from the withdrawal I can now hear lound and clear. In the next few days, ENT and speech will come evaulate her to see if her vocal cords were damaged and to start feeding her. I don’t know what she weighs, but she is so tiny. She is hardly on any meds anymore. She is on milrinone for her heart, heparin whcih is a blood thinner, TPN for nutrition, tylenol and that is it!!  She is going through quite a bit of withdrawal and they still might put her on methedone to treat the symptoms.

I love seeing her face and hearing her gasps…certainly makes me so grateful for everything we have in this life.

Love,Teri

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Breathing on her own!!

She is extabated!!!  They took out the breathing tube last night and watched the numbers VERY closely. There is still a risk that she could be re-intabted, but this morning, they TOOK the ventilator out of her room!.  Thats got to be a good sign, right?  I think so. I can actually see her face and HEAR HER!  It is so unbelievable…for the first time, I cried happy tears this morning when I could start to hear her gurgle sounds. She sneezed and coughed and I could hear it. 

by the time I left the room last night at midnight, all the computers room s were locked so I couldn’t update. I don’t want to miss rounds…I will post more soon. We are just so thrilled

oh- and she pulled out her ng tube on her own…I guess that was pissing her off too. I don’t blame her.

Love,

Teri

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Taking out the vent tonight!

I just talked to the nurse. She said Dr. nancy is going to come by after night rounds, in about an hour, to start taking out the vent. I guess it is a few hours process, but they think she is ready!!  I am heading up to Milwaukee in about 15 minutes….will update soon.

Glory be to God!

Love,
Teri

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Weekend Update

Gabi had a busy weekend. Her vent is not out yet, but they continue to tell me “maybe tomorrow” or “def. in a few days”. We’ll see.

Her Epi is OFF!!  Fantanyl is down to 1 and that needs to be off also in order for them to extabate. She is going through a bit of withdrawal still but the docs are not convinced it is significant enough to treat the symptoms with methodone yet. She was extremely uncomfortable this weekend, so they are trying to find a pain control plan that keeps her awake enough but also comfortable enough to heal herself. Ethan and I, for the first time, got really frustrated with the medical decisions they were making. For example, she is on lasix to help her pee but they are wanted to give her another diaretic orally. I forgot what it is called, but they put it down her ng tube and she has thrown up every single dose they have given her. I was there Saturday night with her when they tried this med for the 4th time and sure enough she puked it up. I was there until midnight holding her to her side so she didn’t choke on her vomit. And then they had the med scheduled again for the next day!!!  Hello??  if she has puked up all 4 doses, maybe she isn’t tolerating that too well. Ethan got to be there on Sunday morning for rounds and he insisted they not give her that med again and they did agree. I was there later in the afternoon when they tried a different diaretic, also given orally, and she tolerated that one just fine.

So before Saturday, Gabi had 2 ways of getting meds introveneously. She had an RA line that went directly into her heart from her chest. She also had her Pic line that goes into her foot. Well, the RA line somehow became dislodged so they needed to remove it. Some of the meds cannot be mixed and some of them take a long time to give (ie albumin is over a 3 hour period) that really cannot be done with her continuous drips. They needed a new peripheral line ( an IV). So, one of the nurses tried and couldn’t get a line it, then a resident tried, and finally Dr. Hoffman, the chief of anesthesiogy, tried and even he couldn’t get a line in. She literally has bruises everywhere on her body. The other thing they could try is doing a central line, typically through your groin or your neck. The docs decided they didn’t want to do that because of the possible damage to her veins. And they will need those for future surgeries. I would like to think it is because she is almost off all of her meds that they wouldn’t need to start a more permanant line being this far into her recovery :) So as it stands right now, the nurses just need to plan accordingly with the meds and just use the Pic line. From now on, we will INSIST that only an attending doc be able to stick her.

Over the weekend, she did not sleep at all. She was wide awake and very uncomfortable. Yesterday, she was a bit more restful, but certainly not sleeping. On yesterday’s rounds, Ethan and her nurse insisted the docs find a pain control and comfort plan for her. The fellow and the attendings will meet this morning and figure something out. It is frustrating when they just continue with the usual meds that just don’t work for her. I know part of it is withdrawal and I do realize that pain cannot be completely taken away, but common sense has to play a role in this somewhere. Like i said before, this is the first time we have been frustrated. But they have responded well to our concerns and answered all of our questions.

That all said, she is still looking good. Her drainage is down to about 200 total for the day, so every day is getting better. As all of this going on, I really do not like being away from her. She needs an advocate by her side. But I will head back up tonight when Ethan gets home from work.

The kids had fun exploring the beaches in Milwaukee this weekend and of course, staying at the RMH is always a big slumber party for them.

We came home last night to a friends’ dinner (thanks Langs!!) and a clean house!  Thanks Suzie. I continue to feel so blessed with all of the help we have received.

Love to you all,

Teri

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Labored breathing but hanging in there

They weaned her ventilator down even more today and she is breathing fast and hard. The docs are keeping a close eye on her and Gabi is def. telling them she is not quite ready to have the vent removed. They are giving her a couple of days for her muscles to strengthen and breath at a more steady pace. Hopefully that will happen soon.

They weaned her fentanyl down to 3 so she is very awake now and it is tricky to keep her comfortable while trying to wean her off this narcotic. She is becoming quite tolerant of several of the meds, so they have to either give her more or try a new one. They also took her Epi down to .02 from .04, so they are certainly pushing her today to really start working hard.

I know she will do it…she is such an inspiration to me and Ethan. She is so strong and just keeps on fighting. That’s my girl!

Thank you for the lunch and dinner today and this past week, month…etc.  We couldn’t do this without all of the unbelievable support we have received.

Love,
Teri

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One month cont.

I am home and just talked to Suzie, another fav nurse. The docs weaned her fentanyl down even more to 3, so she is a lot more awake and with that comes being uncomfortable and agitated. But they are able to give her doses of morphine and atavan as needed.It just breaks my heart when I am not there to be able to comfort her, but I know she is in good hands.

Big news is another chest tube got taken out!!!!  Her right pleural chest tube got removed, so she is down to 2 drainage tubes!!  I am thrilled about this…they look so uncomfortable.

It is great to be home and see my 3 older kids. We went to the pool and I got a chance to show off my post pardum hot bod! Awesome.

I can’t believe my baby is a month old and I have only held her twice. I know our time will come and I will praise God when it does happen. I used to be so scared about Gabrielle’s survival, but I decided to just refuse to be afraid and love with all of my heart. I often read Mother Teresa and this is my favorite quote that I repeat to myself… “love till it hurts.”

“I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.” -Mother Teresa of Calcutta

Ethan Jr. made this crown for her last weekend. I think she likes it :)

Ethan Jr. made this crown for her last weekend. I think she likes it :)

Taking Names to see who is poking at her now

Taking Names to see who is poking at her now

They have these bean bags and gel pads to tuck under her legs and to keep on top of her to simulate being held

They have these bean bags and gel pads to tuck under her legs and to keep on top of her to simulate being held

This is her pic line in her foot. Most of her meds go through this IV

This is her pic line in her foot. Most of her meds go through this IV

This is her right foot where they have an RA line in. This is a sensor that goes right into her artery to measure blood pressure. Usually these are in the wrist and/ groin area, but they couldn't a line into those areas, so she has one in her foot.

This is her right foot where they have an RA line in. This is a sensor that goes right into her artery to measure blood pressure. Usually these are in the wrist and/ groin area, but they couldn't a line into those areas, so she has one in her foot.

This is her right hand where they are measuring her oxygen levels.

This is her right hand where they are measuring her oxygen levels.

Okay, so I have had 2 beers with my wonderful husband, and I need to pump…the pumping isn’t going that well, so whatever I have is a precious commodity at this point.  Do I save the beer infused breastmilk or dump it???

Thanks everyone…we love you all for everything you have done for us.

Love,
Teri

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One month!!

Sorry for the lack of a post yesterday. I was pretty tired and just never found the time to get to a computer.  It’s amazing how quickly a day can go by sitting in a hospital room.

Gabi is doing OK. They are still waiting for her edema to go down. They have weaned her fentanyl down to 4. Fentanyl is a narcotic she has been on for sedation and pain, so she is going through a bit of withdrawal. Her symptoms are yawning quite a bit, shakiness, hiccups, and agitation in general. She is not too terrible yet, but they are keeping an eye on that, and of course, there is another drug (methodone) they can give to her if her withdrawal symptoms worsen.

She is still on the EPI, just at .04. The drainage out of her chest tubes is lessening, but still a lot. Her total output yesterday was 300 cc’s , compared with over 600 cc’s jsut a few days ago. So, we are definitely moving in the right direction.

They haven’t rounded on her, but I suspect they may remove 1 of the 3 chest tubes today…maybe. That would be awesome!  They are still waiting to extabate her for a few more days. Although her vent rate is down to 8, so she is breathing quite a bit on her own.

I am headed home after rounds today, so I will post more later. I can’t believe she is a month old!  She is God’s gift to us, just as all of our children are.

Love to all,
Teri

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Broken record

I feel like these posts are a bit repetitive, but I suppose in these situtaions, no news is good news. Gabi is doing well today. her edema (fluid from the swelling) is feeling much softer and she is looking a little skinnier. They weaned her ventilator down a bit so she will be breathing more on her own. Nancy assures me she is slooowly healing and everyday they find something to push her just a little more, but not too much and then try and maintain her comfort level. We have almost been here a month…I can’t believe it. There are now, I think, 7 HLHS kids on the floor all at different stages. So, we are all in good company.

My mom says the kids are doing well at home and once again we have neighbors that are bringing us dinners this week. God is good and we will get through this.

God bless,

Teri

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Epi back on

They started her Epi drip again, but only at .04…a low dosage. They are focusing on trying to get her swelling down and gone and without upping her dose on lasix. Their thought process is if they get more cardiac output (the purpose of the EPI) then she will hopefully pee more.

She was really uncomfortrable when I got here, but my fav nurse Jacki was a great advocate for her and gave her some atavan, even though the dose bottomed out her blood pressure. Her pressure went as low as 42/20 with a mean of 39. Her mean should hang around 50.  But the docs are aware that atavan does have that effect on her and all her other numbers remain stable, and she is comfortable. As jacki says, it’s cruel to allow her to stay uncomfortable just to keep the numbers where the docs want them. She’s the best! So, they rode out the low pressure and it is increasing now as she wakes up.

They are talking about putting a central line in so they can take out her cardiac lines (lines that go directly to her heart). They aren’t talking about removing the breathing tube yet until she can get rid of the fluid. They explained to me the reasoning for this. It is because there is fluid all around and on top of her lungs and if  they remove the breathing tube, the fluid is just too heavy for her her to inflate her lungs. She is breathing “over” the vent, so the breathing tube at this point is just assistance for her.

Nancy (Dr. Ghanayem) has called our neighbor in W314, adorable little Carsyn, and Gabrielle the MRSA twins. Carsyn had her surgery May 27th and is waiting for a new heart. But she has the same or similiar issues as Gabi with the MRSA, the fluid and fluctuation of numbers. Carsyn’s parents and I think they are conspiring during the night figuring out how to make our lives more exciting. Hilarious, aren’t they?

She looks good. It is good to be here. We are hanging in there and thanking God Gabi is slooowly getting better.

Love to all-

Teri

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Slow and steady

Gabi is holding strong, but nothing that new to report. They took her off 2 of the 4 antibiotics she was on. Her Epi is still off and they have weaned the fentanyl down to 8. The drainage tube on her left is still putting out way too much fluid. At this point, the babies SHOULD be down to about 300 cc’s per day. The left plural tube (which drains fluid collecting around her left lung) put out 370 cc’s alone yesterday. So, they are focusing on getting that under control. She is much more awake and does this gagging thing that looks so uncomfortable. But like I have said a million times, the nurses at CHW are so outstanding…I know they are taking good care of her.

We had a wonderful 4th of July at home, but she was terribly missed. I felt incredibly incomplete without her home. I felt a little guilty having fun with my family and friends knowing that my baby girl is laying in the hospital. Mother’s guilt….what a unique and draining emotion that you can never put into words.

I think this is the longest stretch I have gone without seeing her. It will be 2 1/2 days. I cannot wait to see her big beautiful eyes tomorrow morning/afternoon.

Love to you all-

Teri

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Happy Fourth!

Happy 4th of July everyone! We enjoyed the parade this morning and will have both the Coleman’s and the Danstrom’s over this afternoon. I think the only people missing will be Gabrielle and Connor (who is in Costa Rica for a mission trip through seminary school…we miss you Connor!). Next year, I can’t wait to have Gabi on my lap watching the parade.

She is doing well today. Her Epinephrine is off!!! And she is tolerating it well, which is great news. She is also off the Ketamine which was to help sedate a little and for pain. They are giving her morphine and atavan as needed. Even though  these don’t have much of an effect on her, they needed to get her off that Ketamine. She is still on Fentanyl for pain as well. She is on 3 antibiotics  for the MRSA and still Milrinone for her heart. They also put her on another diaretic (sp?) along with the lasix to help her pee off that swelling. Her chest tubes are still draining quite a bit of fluid, so they are holding off on removing them. Nancy (Dr. Ghanayem…the docs all insist on us calling them by their first names) did say that hopefully this week we will be extabating her and removing those tubes. From what I have heard, the chest tubes are the most uncomfortable things through all of this.

One benefit of driving through Wisconsin is we did pick up a whole bunch of fireworks, so hopefully the rain will hold out and the kids, Big Ethan and the uncles can blow some stuff up.  God bless America and blessings to everyone…

Love,
Teri

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Contact Isolation

She tested positive for MRSA. Luckily they caught it fairly early as she had no signs. They ran some routine cultures and MRSA did grow. She is now on contact isolation, which means anyone that comes into her room has to put on a scrubs gown and gloves. This won’t slow down her progress, but it is a bummer. Touching her was the only way to really connect and love her and now it is through latex gloves.

Her numbers are all OK, bouncing around a little bit, but they are tweeking things as needed. Dr. Nancy and Tweddle are back, so it was nice to see them and get their opinions. Although, Dr. Rao and I were bonding, I enjoy his sense of humor.

The whole family drove up to Milwaukee and big brother Ethan got a chance to visit with her. She held his hand and he touched the side of her cheek. He asked a bunch of questions, including does anything hurt her.   He was beaming when we left. He loves his siblings and he said he couldn’t wait till Gabi gets home.

She received some blood today because her proteins were low. She looked pretty pale and blue, but they are keeping an eye on every possible stat they can get their hands on.

The next short term goal is to get her swellling down even more, take out at least one chest drainage tube (she has 3 right now, it was 4 a few days ago), and to get her extabated. So, she is on the right track…just moving at her own pace.

HAPPY 4TH OF JULY EVERYONE!!

Love,

Teri

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Good day cont.

So far, she is doing great with the chest closure. With the added resistance her heart is now working against, it is expectedly a critical time after this procedure. But she is doing well. Her numbers fluctuated a bit, but she is holding strong. They are even talking about starting feeds again today…with possibly breastmilk.

We are so thankful that she is doing well. These HLHS kids are so unpredictable and they are ride on their own path. But the docs are so patient and get to know the kids as their own person. We are so blessed. Thank you all for your support!

Before

The above 2 pictures were taken right before her chest was closed.

The above 2 pictures were taken right before her chest was closed.

This is her room. W313. They are able to turn the kids' rooms into an OR in about 10 minutes. I took this picture during the procedure while chatting with some of the other nurses.

This is her room. W313. They are able to turn the kids' rooms into an OR in about 10 minutes. I took this picture during the procedure while chatting with some of the other nurses.

I know it's not a pretty sight, but she is beautiful to us.

I know it's not a pretty sight, but she is beautiful to us.

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good day.

Her chest is closed.

Her numbers look good.

Today is a great day.

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Should hear something soon…

Dr. Mitchell is closing her chest RIGHT NOW!!  They are about half way through..I will post as soon as I hear something.

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Chest closing on the schedule

For today…sometime after 12:00 noon. I am heading up to Milwaukee now.

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still on that rollercoaster

Just talked to the nurse. During the docs’ exams this morning…they may CLOSE HER UP TODAY!!!!  No confirmation yet, but she had a good day yesterday (as far as her numbers, not her comfort level) and she had a great night and is still charging ahead this morning….hands are up creeping along to the top of the hill. Yippee!

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