Archive | August, 2009

Not quite there

Our server has been down all morning….so sorry.
She is up to the full strength formula at 20 cc’s an hour. So far she is tolerating that well. She is still throwing up a bit, but a little bit is considered “normal.” They turned off the lipids (fat deposits that are infused intravenously) for good yesterday and Dr. Rao thought that 20 cc’s was pretty close to her goal amount of food.

BUT- she lost weight again today, so they turned the lipids back on and are deciding whether or not to keep the volume at 20 and up the calories…which is to make the formula more concentrated. OR they can keep the concentration the same and up the volume. I don’t know which way they are going to go yet.

Hopefully we can get this figured out and start gaining weight again. She had a great Sunday and so far a great morning, Nicole said she is comfy and content. Yeah! I was warned by MANY many heart moms that the figuring out the feeding plan is one of the most frustrating aspects of this entire journey and boy were they right…all in God’s timing.

Oh and she has gotten 2 negative MRSA swabs back, next weekend will be her last one and if it is negative she can get out of isolation and actually go for a walk in the hallway! How exciting!

Ethan started first grade today and had a great day. Tomorrow is his first full day, should be exciting…

Much much love to all-
Teri

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Plan for the next few days

I am super excited that Dr. Rao is on this week. He really listens to me and pays attention to the patient, not just the numbers. Gabi is on 20 cc’s an hour of half strength formula right now and tolerating that OK, not great, but OK. She has thrown up only 4 times since midnight and is actually sleeping right now. Dr. Rao is Ok with the volume she is on, so they keep her at 20 cc’s per hour and do 3/4 strength formula for 24 hours to see how she does. Tomorrow, they will do 20 cc’s per hour at full strength. Hopefully she will tolerate that and then they will start bolus feeds of about 40 cc’s every 3 hours and then a continuous drip at night at 25 cc’s an hour. That is the goal. Dr. Rao said…”that’s it and then we’ll be done.”

He is also considering ordering another ultrasound of her gallbladder to see if there are any stones that might have formed. He doesn’t think it’s likely, but you just never know. Hopefully this go well and she will tolerate this plan. He said that throwing up 3-4 times a day is considered normal and some crabbiness is, of course, expected…she is a baby.

Thanks for all the support. AM- I am so glad to hear Lincoln is doing well. I can’t wait to meet him!
Love,
Teri

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Maybe not

I knew I shouldn’t have gotten so excited. They have turned her feeds off again because she is extremely irritable and throwing up again. They just don’t know what to do for her anymore. Maybe she just needs to get out of her hospital room…she is crabby cuz she just knows there is something more than her one room she has been in her entire life! Oh, except for an OR and radiology. At this point, I don’t know what they are going to say or do.

All in God’s time. We are still trusting in our good Lord and offering all of this up to Him every day.
Much love to everyone as you all get your school year under way.
Love,
Teri

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Great night

Yesterday at about 5 pm they switched her to half strength formula. This formula is half Prostagen and half something else, I forgot what they said. She tolerated the diluted formula just fine. At 11 pm, they went with the new formula at full strength and so far she is doing great! I am so elated! She has been on a continuous drip at 22 cc’s an hour. I am sure at rounds they will either increase the amount of the continuous drip or go to bolus feeds, which will be a certain amount every 3 hours. They will probably start with an amount of 45 cc’s every 3 hours or so. The bolus feeds of about 70 cc’s (which equals 4 oz) every 3 hours is her approximate goal. So far so good. If they can figure this out in a few days, her PIC line can come out and she will be ready to come HOME!!!

We have Ethan’s open house for school to meet his teacher for first grade. We have spent the morning getting school supplies packed up and labeled. He is very excited. The kids are all helping me pull out the baby stuff today and scouring the house getting ready for their baby sister to come home. Everyone is beyond excited!

The nurse practioners are teaching me how to use the home care equipment. The scale, the pulse ox machine, the feeding pump…it is pretty crazy. An IV pole and other supplies should be delivered to the house in a few days. In the meantime, I am rearranging furniture to fit everything in and trying to mentally prepare myself to not have the nurses and doctors right there for us. I know she will do fine and they wouldn’t let her go home if they weren’t confident she will be OK, but still we are nervous.

Nancy discussed with me that she wants to wait until October to do the Glen. Her shunt seems to be working well for her, so they want to wait as long as possible to do step 2 of her palliation treatment.

We are so blessed. I can’t wait to show Gabrielle what fresh air feels like and what a car ride is. Her guardian angels are sure to follow us home and watch out for her as they have been all along.

Love,
Teri

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No ulcers

We had the upper GI this morning and everything, except for sever reflux, was normal. She is already on prevacid for her reflux and the problem is something more than that. Good news, but still there is no solution. Even Nancy is frustrated at this point. Nicole, my fav nurse, the speech therapist and I asked the dietician if a soy formula existed to replace the Enfaport. The hospital created there own formula for babies such as Gabrielle a few years ago. It is pretty much everything broken down for them, so it super easy for their bodies with comprimised blood flow to digest. Enfamil just came out with this Enfaport in March, so it is a new product that the docs are trying. It does the same thing as the formula that they created. So, the plan is to try Pedialyte for 6 hours to see if her stomach can tolerate ANYTHING. This will determine if there is an anotomical problem or if her stomach is OK. Yesterday, within 3 cc’s of food entering her stomach, she got a bit fussy, within 6 cc’s, she was beside herself and unconsolable for hours, that is when they finally stopped her feeds. So, it a quick trial. She has had 12 cc’s of Pedialyte so far and she is doing great! After the 6 hours, they will try the Portagin (their own formula) and half strength…diluated with water to see how she does. If it is as simple as switching the formula, I will of course be so relieved, but also quite frustrated because we suggested this over a week ago!! Carsyn’s dad, Chris, mentioned it yesterday as well. Every time I brought it up, they looked at me like I was just an uninformed parent. At least they are trying different things. If this doesn’t work, they will most likely do a J tube, but I guess that has a lot of disadvantages. We are really hoping this will bring some answers.

It is so nice to see her awake and happy. For the past week she is either screaming and sweating, or dead asleep getting no food. Poor thing.

Love,
Teri

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another upper GI

SHe is not tolerating anything in her stomach. She is extremely uncomfortable when she is fed at all. They think she may have an ulcer, so they have ordered another upper GI for tomorrow morning. In the meantime, they have stopped her feeds and she is much happier.

Love,
Teri

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Clarification

I spoke with Dr. Nancy and she gave me some clarification. They need Gabrielle to take in a certain amount of calories…a normal healthy baby needs 480 calories a day in order to grow 30 grams a day. Heart babies need about 650 calories in order to gain that 30 grams a day. Their heart works harder and when they get upset or even suck on a pacifier they burn more calories than a “normal” baby. So, when she throws up constantly she is obviously not getting the calories she needs. She is up to 20 cc’s an hour and so far she is tolerating that. With 30 cc’s in an ounce, that is still only a bit more than 1/2 an ounce an hour. So, as we approach going home, the nurse practioner is teaching me all of these conversions and math 101 in order to keep track of her feedings, and weight gain.
Nancy does not particularily like the J tube. This is the thin tube inserted into the G tube to go into her intestines. Nancy explained that although the formula will go directly to her intestines, the bile backs up and her reflux and vomiting could get worse with the bile coming up, which is more acidic than the formula and the stomach acid, which would cause her more discomfort! And, I guess it is very messy. So far, the G tube is super messy also. Every time I try and pick her up, the connections pop off and stomach contents spill all over. I know eventually this will all make for a great story. but right now, not so funny.
My goal is to keep her calm so that she does not throw up. If she is calm and can keep her feeds down, they will let her go home. Hmmm… no pressure.
Getting very exciting, but she is def. difficult to keep calm. She gets sooo mad. I would too.
Love,
Teri

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Confused

This rollercoaster seems to never stop. This morning at rounds, they didn’t think Gabi was responding well to feeds at all. She is only taking 10 cc’s an hour and she just keeps vomitting. They bumped it up to 13 an hour and she was just beside herself. I was hoping that bypassing her esophogus, that will help her stop throwing up, but not the case. I know the suggestion for the J tube is coming. I was really hoping it wouldn’t get to that, but I think it is here. The J tube is a smaller , thinner tube inserted into the G tube that goes right into her intestines and bypasses the stomach all together. This would stay in for a few months and then they can try just using the G tube again too see what happens. She will have the G tube in for a few years. Whatever she needs is fine with us.

Nancy ordered more blood to be transfused into her. I don’t understand why. The nurse didn’t know either. She hasn’t received blood or albumin in a long time. I thought she was kind of passed that critical time. Now, I am confused about how she is doing. I am going back up there tonight or tomorrow early morning, so i will request to speak to Nancy then and get some clarification.

Oh- and they finally put her in a big girl crib! She looks so tiny.

Her big girl crib

Her big girl crib

Bouncy seat in the crib watching Spongebob.

Bouncy seat in the crib watching Spongebob.

No more tubes on my face!

No more tubes on my face!

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Those gauze pads are where the G tube is.  It is all bandaged up for about a week.

Those gauze pads are where the G tube is. It is all bandaged up for about a week.

That is the end of the G tube. There are 3 ports: the big one in the middle is for the formula, then there are 2 side ones, one for meds and the other for the balloon inside her tummy.

That is the end of the G tube. There are 3 ports: the big one in the middle is for the formula, then there are 2 side ones, one for meds and the other for the balloon inside her tummy.

Her big girl crib!  Thanks for the adorable outift Chris and Michelle.

Her big girl crib! Thanks for the adorable outift Chris and Michelle.

To all my HC friends…I got your extremely generous gifts in the mail! I don’t know how to thank you all enough. It has many years since I have seen you all, except for the reunion, but I feel like no time has passed at all. Thank you all so very much!!

Love,
Teri

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Recovering well

Gabrielle is recovering nicely from her G tube surgery. She is a little sore from the incision, but other than that, she is doing great. She seems to be more comfortable and less gaggy without the ng tube in. I wouldn’t want a tube in my nose and down my throat either. The nurse practioner gave me a fairly hefty binder containing more information than I could possibly need about the care of the G tube. It sticks out of her tummy about 8 inches and has 3 ports on it: the biggest one for feeding, one smaller one for meds and another small one for the balloon inside her tummy. 2 of the cardiology nurse practioners are coming in today at 1:00 to start going through the even larger home care binder. They warned me it is quite overwhelming, so they will just go over a few pages at a time. But for them to be discussing home is so unbelievable. We have been in the hospital for 76 days now…to even think about all of us together in our house is like a dream. I asked the NP’s….best case scenerios how long till we can get out of here and they best case scenerio would be about 2-3 weeks still. I will take it!

They have her on a continuous drip feeding through the new G tube at 5 cc’s an hour, about a teaspoon full. At rounds , they bumped her up to 10 cc’s an hour. So far, her stomach is tolerating this. She spit up twice yesterday, but she is a baby and that is what babies do. SHe is on prevacid for reflux…we’ll see how she does with more in her tummy.

If she starts to vomit again, there are small things they can try, like venting out the air in her tummy through one of the ports or switching formula, but I think they will eventually have to insert a J tube inside the G tube that bypasses the stomach all together and her food and meds will do directly into her intestines. That will be the last resort. WE can still try and bottle feed her as often as we can. They don’t want her to loose the oral satisfaction of eating. God knows her family loves to eat, we wouldn’t want her to feel left out.

Overall, she is going great and completely tubeless on her face. When I get home tonight, I will post some pictures. Thank you for all of your prayers!
Love,
Teri

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G tube update

G tube went well. Gabi is breathing well and took meds while sleeping and didn’t even flinch.

Plug and play bayby at this point.

Oh man, almost ready to start thinking about being home.

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G tube

The upper GI results were normal. They are getting started on the G tube surgery right now. It is almost 3 o’clock. It is about an hour procedure. They will give her a general anesthetic and have to intubate her for the procedure, but they can hopefully extubate before they leave the OR. Thanks for all the love and support. We are so blessed.
Love,
Teri

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Upper GI and G tube

They are going to do an upper GI today at 1:30 and then as my friend AnneMarie has suggested all along, they will place a G tube tomorrow. This is a surgical procedure with a few day recover time. I don’t have the specifics of the surgery but will find out later today. I am totally OK with this as placing this will GET US HOME!!! Nancy actually said in rounds, this will get us out of here for a month or 2! How exciting is that!

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Doing great

We got the ultrasound results and everything looks fine. Her gallbladder is small, which is good. The liver specialist seemed to think there may have been a clot at some point near her liver, but he cannot see anything anymore. There is no interference with blood flow in the liver, so the elevated enzyme levels could be due to just a consequence of heart surgery. Her liver has taken a bit of a hit and it could be due to all of the meds she is on and/or because her cardiac function is not “normal”. There is no permamnt damage…the docs described it as similar to an adult having a big night out of drinking, not that I know anything about that.

She spiked another fever last night of over 101, so she is now on another 7 day dose of vancomycin and cefepine. This also starts us over with the MRSA testing. They are trying to get Gabi out of isolation but she has to get 3 negative nasal swabs in a row, one per week. She has had 2 so far but if they have to start antibiotics, then we have to start over. So, after the 7 days of antibiotics, this will unfortunately start us over.

She is vomitting a little less although today she had quite a few episodes of puking. She is up to 18 cc’s/hour on continuous feeds through her ng tube. Speech came in to TRY giving her oral feeds (bottle in the mouth) and she was a total spaz. Jacki, our PT, was holding her while Jen (speech) tried to feed her. The scowl on Gabi’s face had everyone cracking up. Jen said that she did really well. She defintly does not have a direct aversion to the bottle, she just doesn’t quite know what to do with it. Some kids will push the bottle away and get extremely upset, but Gabi sat there scowling at Jen with the bottle in her mouth and it was if she was questioning…”what the #### do you want me to do with this?” She took a few sucks and then didn’t know how to swallow and gagged on the few drops. She tried several times but Gabi was as stubborn as the rest of our children. Tomorrow is another day. To AM- they have not talked about a Gtube yet. I think they want to try and bottle feed for a few more days/weeks at least to see where she is at.

Quick story about Jacki, one of our physical therapists. The first time Ethan and I met her was when we were lost in the hospital on the day of Gabi’s first surgery. We ran into jacki and ashe looked like she knew where she was going so we asked how to get back up to W3. She directed us and somehow we got into a conversation about what we had for lunch. On that particular day, we chose one of the cafes in the hospital and had a sandwich that was quite gross. Ethan explained to jacki what he thought the cafe could do to improve the sandwich. Usually when Ethan starts talking about food, he goes on and on about the spices and flavor combinations and I just quietly stand by until he finishes his thought and nod my head (I love you Ethan!). But this time, he captured an audience, Jacki was concerned about our disgusting sandwich and took note of what sandwich it was and where we had purchased it. About a week goes by and I see her come into Gabi’s room one day and we just laughed! I had no idea she was a physical therapist muchless for the cardiac ICU. So, we have become friends. Carsyn’s parents and I a few weeks back planned a lunch outing and Jacki suggested we go to this place called The Pie House. She swore it was really good and told Chris and Michelle where it was…47th and something…in Milwaukee. So, we drive the 10 minute drive and I notice that we are in not such a great neighborhood, but Chris and Michelle kept checking the street signs and still trusted jacki that her directions were correct. There were boarded up buildings and punk kids hanging on the corner. We drove up and down the few blocks several times and finally laughed and chose another resteraunt. When we get back to the hospital, we told Jacki that we just couldn’t find the place. She looked confused and went to go look it up. She came back laughing and said it was called The Birdie Cafe and it was totally on a different intersection across town. We’ll never let her forget it. She is one of the many care providers here that make us laugh, sometimes, on the hardest of days and for that, I am forever grateful.

My dear friend Nettie came up for a visit today and it was soooo great to see her! Thanks for coming up, your friendship and support mean so much to me and Ethan. Your perspective on life and positive attitude is always so inspiring. And of course, we are praying for your family.

Babysitter is working out wonderfully so far. Thank you to everyone involved who helped us to arrange for her to come over for the next few months!! We love you all.

Love,
Teri

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Ultrasound

Gabi is doing OK. She continues to throw up most of the formula she is given through her ng tube. They have been trying continuous feeds since yesterday instead of the 15 cc’s every 3 hours. Right now, she is getting 8 cc’s an hour continuously. Ethan was there all day yesterday and seemed to think the puking was getting a little better. The nurse seemed to think that because she gets so worked up and angry, that then she throws up. So, we continue to try and figure out if this is “normal baby stuff”, a heart issue, a GI issue related to the heart issue or consequences related to the surgery. Hopefully, it will just get better and we won’t need to know.

The docs ordered an ultrasound for today to look closely at her liver and gallbladder. Her ezyme levels were elevated and apparently because she was on TPN for an extended period of time, there might be damage to her liver. From what we can research online ( I know, I know I shouldn’t look online) it doesn’t seem like it would be permanent damage. I haven’t spoken with a doctor yet, but will when they get the results.

We have a new babysitter coming over tomorrow, so I will head up to Milwaukee as soon as the kids get acquainted with her. In the meantime, we are school supply shopping and cleaning out our house. It’s amazing how fast stuff accumulates, isn’t it?

Our dear friends are off to Ethiopia to pick up their 6th child. He and his new Dad will be home in the next week or so and they will have their family all together. Another friend is waiting for their daughter from China and draining all their financial resources to get her home. I have always taken the fact that my family was all together for granted. Never again. God teaches us in ways we would never expect.

Love,
Teri

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More puking

Overall Gabi is doing well. She is not tolerating feeds very well so far. They tried a bottle yesterday and she totally freaked out. When they feed through through her ng tube, she throws most of it up and is extremely uncomfortable. She has been very irritable and upset the past week and we just don’t know if it is from normal baby stuff or something more. The docs aren’t that concerned, which is frustrating. They aren’t trying to console her for hours on end while she is crying. She is getting 15 cc’s through her ng tube over an hour, every 3 hours. We are guessing that her tummy is upset because it has been empty for over 3 weeks except for all her meds. That would upset my tummy. It may just take time. I am so excited to be at this point, but I don’t like it when she is uncomfortable especially when we don’t know why. Ethan will be at rounds today, and he is much better about voicing his concerns logically. So, we’ll see what they will say. We continue to pray for patience and guidance.

Love,
Teri

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Doing great

Gabi is having another great day! She is quite crabby which we are considering many different reasons: reflux, anger, boredom, possibly still withdrawal…could be a number of things. She is spitting up this foamy saliva and it appears as though she is in pain, so I am thinking it is reflux, even though Nancy insists that because she is not eating through her mouth yet it can’t be reflux. Sometimes a mom just knows better. I insisted they try some zantac, so they are mixing it into her TPN fluids today. We’ll see if that helps. The docs are so incredibly intelligent, but they look at the charts, they don’t sit by her bedside. Frustrating at times.

There are many heart friends on the unit that we have become family with. Carsyn, Jack, Lillyann, Benjamin (who just got to go home!!), Elizabeth, Trish among many others that are either very sick. Watching Gabrielle and all of these amazingly strong kids fight for their lives certainly keeps things in perspective. God has shown me what is truly important in this short life of ours.
I am feeling MUCH more positive today. Gabi’s x-rays are all looking great and the docs are staying positive about her recovery. Besides her fussiness, she is looking fantastic. They are going to try and start feeds with an actual bottle tomorrow. So exciting!

Love,
Teri

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Another good day so far

The chest x-ray from this morning had a “sliver” of fluid in her left pleural chest cavity, but nothing to be too concerned about. They continue to watch it closely with 2 x-rays a day. We’ll see what tonight’s results bring. They are going to introduce feeds on Friday, by mouth and through the ng tube. I cannot believe I may actually get to sit and feed my baby girl. They weighed her this morning and she is now 4.225 kilos or 9 lbs 3 oz. I guess the TPN and lipids have served her well so far. She looks so huge to me and to think that Marissa was 9 lbs 1 oz when she was born! Ha!

She has had no fever since yesterday but she still has thrown up several times today. She is just throwing up this foamy saliva secretiony stuff that I actually thought was from reflux but Dr. Rao thinks it is from a virus that she is working through. She seems to be a little bit more comfortable today.

I am REALLY trying to get happy and stay positive about the chest tube being removed and starting feeds, but I can’t help but feel like another punch in the gut is coming. I am just nervous that the leaky lymphodes are not healed up and the feeds will cause more drainage, which then they would have to replace the chest tube. I don’t mean to be a negative nelly, but sometimes this rollercoaster gets to us all.

But-in summary, Gabrielle is doing awesome and I feel so blessed!
Love,
Teri

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So far so good

Gabi still doesn’t have a chest tube! I can actually walk around with her while pushing the IV cart. It is so so great.
She had another chest x-ray this morning and Dr. Rao said it looked great. There was no fluid and were no air pockets. Her sats all look good and they are talking about starting up her feeds again on Thursday. Those will be critical days as they watch her chest cavity very closely for any fluid build up.
I told the docs I was so surprised that they removed the chest tube and I asked Dr. Rao what was the reasoning behind it and he answered that they just didn’t know what else to do, so “they took a gamble.’ Hmmm…kind of risky, but I like it. He explained that the chest tube had been in for so long that it was a source for infection so if they had to replace, then they would, but so far so good!!
The prayers are working…God is certainly listening.

Please pray for a dear friend of ours and her mother as cancer was just diagnosed in their family. I can’t imagine the fear and uncertainty that the whole family is feeling. May they find trust in God and peace knowing that He will carry them through this difficult time.

Have a great day.
Love,
Teri

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x-ray results

They just looked at the x-ray and the results are great! There is no fluid build up and no air pockets thus far so they will not put in a new chest tube as of right now. They will do another x-ray first thing in the morning. Things could still change, but we are very hopeful! Her O2 sats and respiratory rate are holding steady, so that is a great sign. I just can’t believe it!!!

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unexpected..confusing..but GREAT news

So, when I called later this morning, Nicole, our fab nurse, told me she had great news. I got a bit nervous. THEY TOOK OUT THE CHEST TUBE!!  What?!?!  I am very confused. Early this morning, we were presently surprised that she only had 20 cc’s of drainage yesterday.  I NEVER would have expected them to remove the chest tube. They are doing a chest x-ray at 6 pm to see whats going on in there before they start feeding her. I have not talked to the docs yet to find out exactly what is going on, but we are just thrilled with this news.

My first reaction was that the PA’s took out the chest tube to be able to perform a procedure called pleurodesis, which is what they have told us about all along. But Nicole said that is not on the table as of now. I am headed up there as soon as I can get out of here to talk to the docs face to face.  I am so excited to see her and hold her without that stinkin’ chest tube!

I prayed last night asking God very specifically for less drainage so that we can progress forward.  I think He answered without question!  I just hope she continues to not drain because now the fluid has no where to go but accumulate in her chest cavity. I am trusting the docs that they know what they are doing.

I will update as soon as I speak to the docs.

Thanks for all of your continued support and prayers. Good luck with training Belinda!  Belinda is an old friend of mine from high school and we found each other on facebook. She is running in the Chicago Marathon in Gabrielle’s honor. Visit her website at  www.heroesforlife.org/goto/bsteckenrider and consider making a donation.

Love to all,

Teri

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No mistake…

First…Happy 2 month birthday to my baby girl!

The 90 cc’s measured the other day was not a mistake. She measured out 72 yesterday and still has fevers running up to 103. She seemed to be feeling a bit better this afternoon. She sat in my lap content for a long while. The past few days she has just been really uncomfortable and mad…I guess I would be too. the cultures they have taken so far come back negative, so it may be just a virus that needs to run its course.

Nancy, Dr. Tweddle and a few other docs will be discussing tomorrow morning what they want to do about her chest drainage. She really has had more than a week now of no progress. Dr. Rao said they would be presenting us our options after that meeting.

There was another 2 kids on our floor that passed away over the weekend. I had met both families at the Ronald McDonald House and I can’t imagine the pain they must feel. The only comfort is knowing that their precious children are not in any pain anymore and are at peace with God.  It really hits home and humbles us quite a bit. There are other really sick kids surrounding us as well that I continue to keep in my prayers. Hug your children a little tighter tonight before they go to bed.

Stay cool and many blessings to everyone-

Teri

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Back up to 90

Her chest output was back up to 90 cc’s yesterday. BUT the container that the nurses measure the fluid in spilled, so we are thinking it might have been a mistake. Either way, it is not zero and there is no way to know for sure, so we will just continue to wait.

Her new PIC line went in just fine and she is comfortable for right now. She continues to have fever spikes but so far nothing is growing in her cultures. She had 2 uncles and her Grandma come visit her today. I am glad she was awake for all of the action in her room.

That’s it for now…we continue to wait. Thanks for the continued support and prayers. Have a great weekend.

Love,

Teri

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Fever spike and new PIC line

Good news is that on Wednesday her total output from her chest tube was only 30 and yesterday (thursday) was only 20!  We are getting there. Maybe a few more days until we get nothing from that tube. Then they will wait a few days at zero and then try and feed her again. Hopefully the leaky lymphodes have healed up and then there will be no more drainage and she will be able to work on feedings.

For the past 2 days, she has had several fever spikes of up to 103. They took a urine culture and several blood cultures. The results will be available in about 48 hours. In the meantime, they have started her on vancomycin to fight off the possible infection. They are also going to start another PIC line in her groin area. The NICU PIC line she has had since the surgery has been in too long now and is a source for infection. I think they were hoping she would be better by now and wouldn’t need a new line, but alas she is still there and still needs meds introvenously. They are taking her down to radiology to get the line in now.

Please continue the prayers for Gabrielle and our family. We are all holding up OK but as the summer comes to a close and we are getting school supply lists ready, we just want our family to be together and under one roof.

Love,
Teri

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Sixty

Yesterday they measured 60 cc’s out of the chest tubes. Down from 80, but still a ways to go. The docs said this is taking an “unusually long time.” We’ll get there. In  the meantime, we wait some more.

We gave her a bath today and got her dressed in some cute pink clothes. She is at my favorite baby age…so focused on voices and faces and wants to talk. I can’t believe she will be 2 months old this weekend.

I found this poem on another blog and just loved it.

1/2 OF AN ANGEL’S HEART

It’s a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus “I don’t want to leave, I like it here, and I will miss you.” He reassures the scared little angel that everything will be okay, and that the angel is just going for a visit. The little angel is still not swayed on this idea. So Jesus kneels down, and says, “How about if you leave half of your heart here with me and take the other half with you, will that be okay?” The angel smiles and says, “I guess that will work.” But the little angel is still a little scared. He asks, “Will I be okay with only half of my heart?” Jesus replies, “Of course you will, I have other angels there that will help you out, and you will be fine.” Then Jesus gives the angel more details about His plan. He says, “When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart.” “Enjoy your time with your family, play and laugh everyday.” “And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.”

With much love and many blessings,
Teri

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Wrong direction

Eighty.

80 was the total yesterday. We are going in the wrong direction. The doc is putting in a CVP line right now.  This is to measure central venous pressure. It is a more accurate reading of blood pressure and they want to see if her pressures are too high that could be contributing to this drainage. Frustrating, but what are gonna do?  We continue to pray and wait.

Love,

Teri

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Forty four

I thought we were getting somewhere when she only had a total of 44 cc’s yesterday, but today she already has 30 that drained out since 6 am and it is noon right now. The docs didn’t change anything, they really want that drainage to be as close to zero as possible. So, we wait some more.

look at me...just one tube on my face!

look at me...just one tube on my face!

Jenni, Gabrielle's physical therapist working those muscles.

Jenni, Gabrielle's physical therapist working those muscles.

Who can yell the loudest for all of Milwaukee to hear?

Who can yell the loudest for all of Milwaukee to hear?

Love, Teri

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Weekend Update

Not much new with us. Gabi’s output from her chest tubes remain about the same. Friday was at 67 cc’s and Saturday was at 70. We’ll see what happens today. Just more waiting. Other than that, she looks great. Her O2 sats are good at about 85. She is still room air without any oxygen support. She is off the valium and almost off of her methadone, but she is still comfortable. The thing that makes angers her the most is diaper changes.

Lots of action on the CICU this weekend. Another little baby was put on ECMO and a little kiddo next door to us almost didn’t make it, but Nancy and the whole crew with a lot of running and teamwork were able to save his life.I don’t know any details.

Carsyn needs to pee. Her kidneys are not kicking in like they are supposed to. Please keep them in your prayers.

Thanks and lots of love-

Teri

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