Archive | October, 2009

Halloween night cap

OK… I have to apologize for my pity party lately.  I love this:

I had a thought…today…Gabi did celebrate Halloween..she’s a superhero!!! A true and brave superhero! She is SUPERGIRL! She had her siblings who were out there getting her candy so when she has teeth she can try some…from home!!!

Thanks Lisa!  That is awesome.  Now I am picturing her in a supergirl costume and it is cracking me up.

Thank you everyone for lifting me up.  SOmetimes it feels like we are the only people that have ever gone through this, but wow…so not true.  Gabi is doing great and she may get to come home soon.  So, I will quit complaining. My kids had a blast with their amazing Dad and great neighborhood.  They didn’t even miss me, which makes me so happy!

Much much love and hope everyone had a great Halloween!!

Teri

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Happy Halloween!

HAPPY HALLOWEEN!!  Gabi is doing really well today.  I spoke with the neurosurgeon again and he is very pleased with her progress. Her numbers look great and she is resting comfortably.  The fluid that he saw in Gabi’s abdomen which caused him to pause was still there but much more clear. I think they have all concluded that it may just be her anatomy and that because her heart isn’t as strong as it should be, there may just be fluid collecting. They did give her a few doses of lasix to try and get rid of some of the fluid and she has been peeing like crazy. 

Nancy and the cardiologist said she looks great from a cardiovascluar standpoint, so they are communicating closely with neuro to find out what the next few days will look like. She is still on vancomycin and I think all the docs are passing the buck so to speak about who is going to discontinue it.  I think someone will pull the trigger tomorrow because there are no signs of infection.  Her blood work all looks great again. 

She has her cath scheduled for Nov. 9th and I asked if she could come home for a little before that and Dr. lew, the neurosurgeon didn’t have a problem with it and I don’t think Nancy will have a problem with it either.  So, I am going to push for her to come home soon!  She needs to rest and be home with her family before this next procedure and another heart surgery approaching. 

The hospital is very quiet today but the few kids that are here are absolutely breaking my heart. It is especially difficult being here on a holiday… be it Halloween, a birthday, Memorial Day or Christmas, a child does not belong in a hospital. It just isn’t right.  I wish I could be there when my kids get home from trick or treating and watch them dump out their candy and sort it all out like we used to do when we were kids.  And I can’t stop thinking of my friends that are out with their girls trick or treating and their third daughter should be in the stroller with their Daddy on the sidewalk dressed up as a pumpkin, or a lion, or a bumblebee. It just isn’t right. 

I hope everyone is treasuring the moments they have with their children as they dress up in a silly costume or a scary one or are now too cool to dress up. Even if they drive you crazy with their silliness and sugar highs because they never ate any dinner, enjoy those moments.  I know my friends Chris and Michelle would do anything to spend another moment with their daughter. And I would do anything to bring Gabi home and listen to the craziness of the house and the neighborhood.

As I sit here with Gabi alone listening to the monitors beep and watch the leaves blow around the parking lot from the window, I know betters days are ahead, but this is really a tough day.

Love,
Teri

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Good Graces!

Finally some good news!!  Gabi’s surgery went fine.  Her VP shunt is completely internalyzed now and she is handling the pain like a trooper. My mom is in Milwaukee so someone is able to be by her side.  I am so thankful for that.

Tomorrow I will head up and find out more about the infection and the next step.

Thanks everyone for your love and support.

Love,

Teri

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Brain surgery under way

They took her a little late.  She just got into the OR at 2:00.  Hopefully we will get good news after.

Thank you for all of the offers for cars, and help. We are trying not to loose it and waiting for news about when the car will be fixed so I can get up there.

To think of her waking up and me not being the first face she sees when she gets back to her room makes me sick to my stomach, but she can handle it, I know she can.  And the nurses are wonderful…even though we got shafted up to 4.

Teri

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Brain surgery with no car

Our days just keep getting better and better. So, I am racing home last night from Milwaukee to get to Ethan’s first grade concert that he has been practicing for since the start of school.  It starts at 7:30. Crusing along, thump, engine light on, I cannot stear, accelerate or break. You know that song by Carrie Underwood, “Jesus take the wheel.”  Literally that was me. I managed to get over to the slim shoulder in the midst of construction. Cars whizzing by me as the entire minivan is shaking so tremendously I thought it was going to blow over.  Long story longer, the car is in Gurnee waiting for repairs.  Thanks to my WONDERFUL neighbor and great friend, Heather, I was able to get home, but not in time for the concert. I found some grace in the beer I had at Chili’s where the tow truck dropped me off as i waited for Heather. A nice cold beer and a hefty laughter eases a lot of the pain.

So, now I am stuch at home scrambling to get Halloween costumes ready for the kids’ Halloween parade, talking to mechanics about warranties and get a call from the NP that they are taking  Gabi to the OR at noon to finish up the shunt surgery. Which, of course, is great news, but I can’t be there for her.

Nothing has grown in the cultures still and I am anxious to get up there somehow to talk to them about what exactly the plan is now.

Unbelievalbe. I wouldn’t get through this without everyone’s support. Thank you for all of your uplifting comments and advice.  We need it.

Love,

Teri

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Much much confusion and frustration

Because we have moved to the 4th floor, there are all new doctors and NPs.  I feel so alone and abondanded and no one knows Gabi’s full story and they don’t know “her.”  It is very frustrating and just adding to my stress.  I talked to one of the cardiology NPs that i know very well and told her we all need to get on the same page.  She def. agreed and is going to do some “housekeeping” and start coordinating for a care conference.

The results of the CT scan are not back yet. One of the new docs up on4 (which is just a general ICU vs. our 3 floor that is a cardiac ICU) said just because the puss has come back negative so far for any bacteria growth, Gabi’s glucose and protein levels are too high, meaning there may be something going on…infection wise. So, they all agreed to keep her on antibiotics for another 7-10 day course.

We haven’t heard a word from neurosurgery even though we have paged them several times.  I am waiting for them to come down now. They did agree to start back up her feeds, which is good, but that also means they defintely won’t be finishing up the internalyzation of the shunt preocedure today .

The cardiologists have apparently scheduled her cath for Nov. 9th.  Our surgeon is accustomed to having the results from the cath so he doesn’t want to just do an MRI, even though that is where the treatments are headed. 

They all agreed that Gabi won’t be going anywhere for a while.  I can’t even tell you how disappointed I am.  I really don’t think I can take much more of this.  You know that phrase “God doesn’t give you more than you can handle”?  Well….thats a bunch of crap because I can’t handle this.

It is Halloween and I feel like I can’t leave Gabi’s side because when nurses walk in and ask me why her eyes look so blue and her O2 levels are so low, I want to scream!  My other kids need me and so does my husband and we are once again a torn family. Quite a pity party, I know…

Love,

Teri

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good puss?

The did a quick analysis of the fluid that came out during surgery, and it appears not to be the bad puss we were worried about. The nurses seem to think that the Neurosurgeon was premature in diagnosing an immune deficiency, since she has been able to fight off infections in the past.

They are putting some “contrast” into Gabi’s belly and PIC line so that when they do a CAT scan tonight they can get a clear look at what is going on. I will post updates as I get them. Right now they are hoping to finish internalizing the shunt tomorrow, but we will know a bit more after the CAT scan.

Teri and I are both pretty rattled right now, but things don’t SEEM as bad as they did at first blush. Hopefully the aborted surgery is just a little bump in the road and not something that is going to change our path home.

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update

She is not back from the OR yet, but I just spoke with the surgeon. It didn’t go as well as they hoped.  They put the shunt in her head but when they got to the last step of placing the tube into her peritenium (her belly), he opened up the previous incision and there was a pile of puss that oozed out.  Dr. Lew had to externalize the last part of the shunt and it is coming out of her belly area. I haven’t seen it yet, but I am sure it is not pretty.  This means, they will still have to level her and control the pressures. Which also means I cannot hold her.

He called in a general surgeon and infectious disease to get a sample of the puss and test it for cultures.  The curiuos part is that she has been on gentomycin and vancomycin for 8 days now.  The docs don’t know what kind of infection this may be.  Dr. Lew ordered a CAT scan of her abdomen and we will wait to see what the cultures reveal.

Dr. Lew also mentioned that he is worried her immune system might be suppressed. I don’t know what the treatment would be for that.

We could really use all the spare prayers you have for us.  I don’t think I can take much more of this.

Love,

Teri

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Surgery in process

She is still in surgery.  I am anxiously waiting in our new room.

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Waiting

We are still waiting for surgery to come and get her.  Should be soon. It is 11:15 now, they said about a half an hour more.  We are getting moved up the 4th floor.  The nurses have more experience with VP shunts and they need a cardiac room for an emergency kiddo.  Room 402. 

Praying all goes well.

Love,

Teri

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The next steps

So, I have some light night time reading this evening.  Colleen found 2 articles about intercranial pressure and cerebral blood flow.  I can’t wait to cuddle up and read all about the risks my daughter is about to undergo. Always a party.

There was a cardiologist here that I have met once or twice that did his training and worked in Cincinatti for a while. (Lisa B., you may know him… Dr. Todd Gudausky??…very nice). He has seen a few patients with a VP shunt going into their Glenn. Of course, there is more concern and higher risks, but between all the teams (neurosurgery, cardiology, cardiac intensivist and me) we will be able to see what Gabi needs.  The increased blood flow will cause more pressures and if/when it causes more CSF drainage, then that is OK.  Her body will balance it out.  I also spoke with 2 neurosurgeons and got their opinions and they both also agreed that going into the Glenn will be “fine”.  No worries, right? 

They are planning on proceding with the internalyzation of the shunt tomorrow second case, so around 10:30 am.  The procedure is about an hour and a half and she will be under general anesthesia and intabated. 

The plan from there is do a cath in about 10 days provided the brain surgery goes well tomorrow.  This is standard pre-Glenn orders. A cath is a procedure where they insert a catheter in the groin area and it goes up into the heart to measure pulmonary pressures and fix anything that can be fixed while in there. They can balloon open an artery, plug up any inappropriate blood vessels that have expanded, or insert a stent if needed.  They are not expecting Gabi will need any of these.  These little hearts need to be pumping at certain pressures to be able to be a good candidate for the Glenn surgery. 90% of the patients are good candidates.  They are not anticipating any problems with Gabi.  In fact, 2 of cardiologists are pushing for an MRI instead of doing a cath.  A cath is very invasive and requires sedation and intabation.  Gabi has never had any issues with pressures in her heart or lungs, so they don’t want to put her through another procedure if they don’t find it necessary. The only drawback to an MRI is that if there is something that needs to be fixed, they obviously can’t fix it on the spot. We’ll see what they decide.

After the cath or the MRI, the Glenn will probably be scheduled about 2 weeks after that.  So, late November.  There may be possibilities of going home in between all of these procedures, I am certainly hopeful, but we all know what happens when we try and go home. :)

Gabi is growing so incredibly bored with being here. She can only lay on one side because the EVD is literally stapled to her right side of her head, so I can only imagine how sore her little body is.  I have been able to sit her up in bed for a little bit and play with some toys, but then we had to level her off again: her shoulders have to be level with the EVD. I can’t wait till this surgery is over.

There is a new family next door to us and I peaked at the dry erase board where parents can write their phone numbers or any messages to the nurses and their phone numbers started with 847…there son looks about 12 years old.  I will try and meet them tomorrow.  It’s amazing the people we have met here.

I feel like a broken record when i thank everyone for their support, but I do really mean it…

Love,

Teri

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The plan

Gabi is doing great. They are checking her PTT level (basically her anti-coagulant levels in her blood), checking for cultures once again and looking at the results of this morning’s CT scan.  Based on those results, they will decide when to internalyze the VP shunt.  They are still hopeful it will be tomorrow.

After that, the docs are still trying to come to an agreement about when to do the Glenn procedure. Not only do they want her to be as healed as possible from these brain surgeries, but there are also other concerns.  Of course, infection and the anatomy of her heart after the Glenn.  The way they recontruct her heart during the Glenn, a lot more blood flow is brought to the head. Most kids suffer from Glenn headaches for about 2 weeks following the procedure because of the increased blood flows and pressures.  Well, she has a shunt to control the CSF fluid to drain appropriately based on the pressures in her head.  Also, I found out this morning, Gabi is their first patient with a VP shunt going in for the Glenn.  I trust them , but also want to do as much research as I possibly can. (I got my best researcher on the job now!) I guess what I would like to find out  is if increased blood flow to the head will affect CSF production and if the shunt can handle the new pressures.

I am waiting to talk with the cardiologist to see if they know more.

In the meantime, Gabi is strong, stable and looking great. I even got a few smiles this morning after her bath.  She is a fighter and I know she will continue to fight through these next few months.

Love,

Teri

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How do you know?

How do we know God is there?

1. Although there was a lot of bleeding in Gabi’s brain, the areas where the blood collected and is now draining were in areas not causing any damage or threatening her life. The blood remained in the fluid spaces and did not absorb into her brain matter. We are so grateful, there is no neurological damage.

2. When Gabi received her first heart sugery, there was a choice of 2 shunts with the decision left up to the amazing surgeon, Dr. Tweddle.  There was either the BT shunt or the Sano.  Big T chose the Sano as Gabi lay in the OR paralyzed and he had to make a decision on the spot. Now, months later, she has bleeding in her brain and they had to turn off the heparin drip and discontinue her aspirin.  She was on those to prevent any clotting near that Sano tube shunt in her heart.  Because Big T chose the Sano tube, her little body can tolerate not being on any anti-coagluants to stop the bleeding in the brain.  If the surgeon had chosen the BT shunt, her life would be threatened and would not be able to tolerate being off those anti-coagulants. How’s that for intervention?!

3. The neurosurgeons had to also discontinue her lovenox injections until all of these brain surgeries are complete. From results of an ultrasound, the docs have determined that the blood clots in her groin area have dissolved enough to allow for a period of time without her lovenox injections.

4. Our friends and family have literally carried us through these past few days.  Thank you especially to Heather and Steve, Colleen and Rich, Shelly, my mom, Chris and Michelle and their mother, Nancy, Meg and Jim for Kristina.  I am sure we are missing others so a general thank you to everyone! God certainly shows us His love through people like you.

5. Because of our strong faith, we were able to forgive those who made mistakes in the past few days.  There was miscommunication among nurses, neurosurgery and the cardiac team. But there was no long term damage and we were able to figure out an ongoing plan where this doesn’t happen again.

Gabi is doing well again.  She is stable.  The tentative plan is to internalyze the VP shunt on Wednesday.  This, of course, is hospital time so we are taking this plan with a great possiblity for change.

What happened?

All day Friday, the EVD (stands for external ventricular drain, which is the external VP shunt) was leaking fluid tinged pink with blood. The fluid is supposed to be clear as water.  The nurse on Friday followed what she thought were correct orders from neurosurgery to allow as much drainage as would come out of the EVD. The EVD can be clamped off to stop the pressures in her brain pushing out the CSF (cerebrospinal fluid).  We all have CSF but we all have slightly different amounts and pressures in our brain. To have a magic number, say gabi should drain 5 cc’s an hour based on her weight and age, is nearly impossible.  “every kid is different”  So, the nurse and neurosuregery was allowing Gabi to drain about 10 cc’s of CSF an hour. We aren’t sure if the nurse didn’t follow the orders or if the orders that neurosurgery had put into their system were unclear.  Doesn’t matter. 10 cc’s turned out to be way too much.  She was overdrained.  When this happens, the fluid around the outside of her brain to cushion it against the skull was all drained out. This caused her brain to press against the bone and break all kinds of fragile blood vessels that they call bridging vessels.  Thus the bleeding.  The blood remained in the fluid spaces and the treatment for this would be to place a VP shunt.  With Gabi, the shunt working too well caused this.  Kind of ironic.

After reviewing a CT scan, blood work and a neurological exam, there is no brain damage. We are so incredibly thankful. The plan now is to drain 3 cc’s of CSf and NO more.  So, whomever is unclamping the EVD has to sit there and wait for 3 cc’s to drain. Sometimes it takes 20 minutes when she is resting, when she is crying it takes about 5 seconds.

The internal shunt monitors the pressures automatically. For example, when she cries or poops causing more pressure in her head to push out CSF, the pressure in her abdomen also increases, so the placement of the shunt and the pressures within her body essentially balances itself out.So, this is the goal to get this back internally.

Wow. I hope that all made sense.  Ethan drove up to Milwaukee yesterday afternoon so that we could have a consultation with neurosuregy to MAKE SURE this doesn’t happen again.  The doc apologized for the miscommunication and we came up with a plan that we all feel comfortable with. I had met with Nancy and the cardiac team earlier in the day so that we all were on the same page.

We feel much better about the situation now.  Gabi is doing well again. She had an uneventful night, so that is all we can ask for.

Thank you all of the support!

Much love,
Teri

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Falling down

There was some sort of miscommunication from Neuro, and Gabrielle’s shunt was draining too fast. It was supposed to be at 3cm/hr and it was at 10. This has caused some issues with the capillaries that pad the brain as it floats in the cranium. Since the fluid level dropped too low, the brain moved towards the cranium, and some of those capillaries burst. This caused there to be blood in the area between the brain and skull, which is then visible as it drain out the external shunt.

They did a CAT scan and the bleeding appears to be localized in the in-between space, which is good. They don’t suspect any neurological damage, and I haven’t heard an burr hole talk or anything like that, though I am here in Chicago, not there with Teri, so info should be taken as is.

Teri had to stay with Gabrielle last night because everytime Gabi cries it increase the pressure in her skull, and forces the fluid out too fast. To keep the rate where it needs to be the valve needs to be shut off every time she cries, which means somebody has to be within arms reach at all times.

Right now they are waiting to see how things develop, they have shut down the blood thinners, which were about 10% beyond where they wanted the blood thinned when they tested. The balancing act is keeping the blood thin enough to not have any clots develop in her heart shunt, but not so thin that the brain shunt can’t heal.

Teri sent me a text at 6:30 this morning, and said that the fluid contains less blood as it drains out, which is a good direction to be going. We are pretty frustrated about how Neuro has followed up, and whenever we ask for somebody to come down and answer questions, they send some Jr. level doc. Teri has a call in to Nancy and we are going to schedule a Care Conference with all the docs so we make sure things stay on the same page going forward. Judging that the bleeding has slowed already, the nurses are pretty confident that we are through the heavy part of the woods, but we really don’t want this to happen again.

It was nice that my brother, Connor  was here with me last night as this all kind of came down, but truly painful to not be there with my wife and Gabi.

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Holding strong

Gabi is holding her own.  She has been very sleepy today just recovering. The nurses had on hand extra narcotics and opiates to help with her discomfort, but she has been sleeping comfortably for most of the day so they haven’t had to give her anything. She is a tough little girl!

Walking into the ICU early yesterday morning aside Gabi on the stretcher was like walking into a family reunion.  I was welcomed with sad hearts and lots of hugs from the docs, fellows, nurses, respiratory staff, PT, OT… even the cleaning crew gave me a big hug.  We got comfy real fast as Children’s has literally become family and a second home to us. Even the cook at the little cafe in the lobby was sad to see us back.  (I know you all find it surprising that Ethan has become chums with the cook).

The external shunt is working fine but  is very sensitive to pressures and levels.  It has to stay level or below her belly button or it will drain too quickly which would be extremely dangerous.  Without fluid, the brain falls against the skull, causes bleeding and damage.  Neurosugery is keeping close tabs on the amount of fluid drained and the timing and the pressures of the shunt.  We can pick her up, but to jostle her around would be a little risky.  She received a tranfusion today and new fresh blood always makes her comfortable…( No, she is not a vampire) :)

They did an ultrasound of her groin area to see how the clots are dissolving.  One has gotten much smaller, but another is being quite stubborn. The intensivists and the neurosurgeons are working closely together to find the best treatment for the clots.  In the meantime, they are holding her lovenox injections, but she is on a heparin drip and aspirin. We’ll find out more about this at rounds tomorrow.

The docs didn’t want to push her too quickly, so they just gave  her pedialyte through the night.  Her feeds were turned on at 7 am and started very slowly at just 24 ml’s an hour (an ounce is 30 ml, so it is less than an ounce an hour).  She is now up to 29 ml’s an hour and her goal will be 37 ml’s with a denser mixture.

Oh- The big great news is SHE IS OUT OF ISOLATION!!! YEAH!!  No more yellow gowns and gloves.  She got her third consecutive negative MRSA swab and the RSV and Influenza tests came back negative as well.  They will continue to monitor the CSF (cerebrospinal fluid), the fluid that is draining from her brain until it is clear of infection, but infection control has allowed to be out of isolation.  As soon as the CSF is clear, they want to wait a day or 2 and then they sill surgically place a new VP shunt.

The docs are all discussing if this will affect the timing of her Glenn surgery and so far, no one has a firm opinion about it. Nancy is returning from out of town tomorrow and I guarentee she will have an opinion one way or the other.

Thank you all for your continued love and support. I know you are all carrying us through times like these.  We continued to feel so blessed that Gabi is in our lives and so honored that we get to be her parents, but I won’t lie…it isn’t easy.

Our new friends in Milwaukee area have opened their homes to us and brought us food, even though they are still still so raw with pain. And our friends and family that have helped us, we are so very grateful.

much love to you all-

Teri

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Recovery

The transport team late last night/early this morning was absolutely amazing. Upon admission, Gabi had blood cultures drawn, a urine sample collected, an IV placed, a sample of her brain fluid drawn, a CT scan, chest x-ray, a shunt series x-ray…I can’t remember what else until  her PIC line was placed.

At 2 o’clock in the afternoon, Gabi got a PIC line in her right leg. She still has 2 large clots in that leg, but they couldn’t get a line into the left leg and inserting anything in her upper body is just too risky with her heart condition. It is risky to have the PIC line near those clots, but they will keep a close eye on it with ultrasounds. She was sedated and did well.

An hour later, the anesthesioligist came in and said the neurosurgeon was ready for Gabi.  They removed her shunt and placed an external one. It actually doesn’t look as horrifying as I imagined.  The surgery went well and she is recovering nicely.  The external shunt will stay in for 5-10 days until a sample of her brain fluid comes back negative with infection. She is on antiobiotics and will be for a couple of weeks.  As soon as the fluid is clean, they will put in a new internal shunt either on the same side or on her right side, depending on how the site looks.

Needless to say, she hs had an extremely busy day and she is exhausted and sore.  Thanks for all the phone callss, emails, texts, comments….everyone’s support  means so much to us.\

We couldn’t get into the Ronald McDonald House, so our great friends, the Buchmann’s offered us a place to stay.  So we have a comfy couch to sit on for an hour until we try and get some sleep. Thank you Chris and Michelle.  You guys are the best!

Love,

Teri

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Shunt infection

They have confirmed a shunt infection. Teri and I THOUGHT that this would be a round of antibiotics. Not the case unfortunately.

She will go into surgery today or first things tomorrow to remove the infected shunt, and install an external one. They will use this for 5 days to check the fluid that is draining and troubleshoot in general. Once that is finalized, they will go back into the OR and put in an internal one like she has now.

This is about as much as I was able to get from Teri. We are all pretty tired, and might be able to get a more detailed update up as we learn more.

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Overhead bags may shift during turbulance

Gabrielle woke up at 2am puking, and was having a lot of trouble calming down. She felt clammy, and somehow was getting a ton of air in her stomach. We called 911, and they transported her to Mil after an initial exam turned up a fever and some wheezing in her chest.

When they got to Mil they discovered the shunt was backing up, and are doing a series of scans to find if there is a block in it someplace. If there is they need to do a “revision”

Teri is in Mil with her, and I am running around getting the kids off. I will post an update as information comes in.

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Burst capillaries

The spotted blood in her spit up was just a burst capillary in her stomach, which apparently happens all the time even with normal people.  But because her blood is so thin being on aspirin and lovenox, she bled just a little more than usual.  So, nothing to worry about.  She continues to gain weight and her sats are holding strong.  I can’t believe we have been home for 13 days.

Our next appt is next Tuesday, the 27th, and hopefully we will get a date for the Glenn.

In the meantime, she is loving being home.  She just loves to hang out with her siblings.  We finally got out in the stroller for her first walk outside!  The sun on her face and the wind blowing were a bit overstimulating, but she’ll get used to it.

We are so blessed and so happy.

I hope everyone is having a great week.

Love,
Teri

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Gassy night

Gabrielle is doing great overall, but there a few concerns.  She has been incredibly gassy and pooping a ton. The pediatrican was concerned about dehydration, but because she is on a med called Reglan to help her stomach drain into the intestine faster, a side effect of that is more frequent and looser stools.  She also has incredible gas pains.

This morning she woke up and had a really small spit up on the burp towel next to her and there were dark red spots on it. I assume this to be blood and do know that aspirin can cause bleeding in the stomach lining.  I have a call in to Milwaukee to find see what they think.

She has gained a lot of weight and her sats are looking fantastic. So, mostly good news.

We had Marissa’s 3rd birthday on saturday and she had a wonderful time. We finally have some girl toys in the house and she is in heaven!

Happy Birthday to my dear friend/cousin Jennifer!  35 right Jenn?  You don’t look a day over 20! Love you and wish we could make a Nashville road trip!  Soon, soon….

Love,
Teri

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Cold pizza

How fun to hear from old friends that we have known for so long and have been on this journey with us.  Thanks for the anniversary wishes.  Last night was great. I suppose it was  a typical anniversary for a couple with 4 kids under 6 years old and one being sick.  We ordered a pizza…a good pizza from lou’s and Ethan thought he’d save some time and $ and go pick it up.  All the kids (including Gabrielle) went to bed around 8 and Ethan thought he would celebrate (or be a total pig, you be the judge) and order some sushi for himself. he headed off on his journey and poor thing got lost, like he always seems to do.  Long story short, we ate our pizza and sushi at 9 pm and Ethan was extremely frustrated with himself until I teased him that the pizza was cold and we laughed.  i love you Ethan…

Gabi is doing great. She lost another 10 grams yesterday and I was supposed to call in, but I didn’t.  She looks good and I know they are just going to up the calories and/or volume of her food, so I wanted to give her (or me) one more day without lots of spitting up. She of course caught our colds so she has been quite stuffy. Her O2 sats were down to 68, but I gave her a bugarectomy with the bulb  suctioner and they bounced back up to 78.  Phew.

The early intervention coordinator from the birth – three program came over to the house yesterday and Gabi qualifies for all kinds of services: PT, OT, home nursing, respite care, speech, feeding specialist…I can’t remember what else.  They all will be coming to the house, which is so nice.

We have a pediatrican appt today for a general check up.  I don’t know what the heck they are going to tell me that I don’t already know.  We’ll see.

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We are settling into a routine as best we can and loving every second of it. We are so grateful. I look into her eyes and she just focuses so intently on me and smiles. She is our miracle. Amazing that 4 months ago, she was on life support and we didn’t know if we’d get to know her at all. God’s grace.

Love,

Teri

She loves her big brothers and sister

She loves her big brothers and sister

And they love her

And they love her

Marissa was insisting that Gabi prefers Diego over Spongebob...very important info.

Marissa was insisting that Gabi prefers Diego over Spongebob...very important info.

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Nine year journey

I can still feel the gravel pressing into my knee as I asked Teri to jump on this crazy train of life with me. There have been many times during the last nine years that we have looked each-other from across the room, and wondered what they heck we are doing. Most of the time I still can’t believe she is even dating me.

When we were planning our wedding we kept thinking that things would calm down after that was over. Then we thought it would calm down once I found a decent job. Then we were waiting for the first kid to be able to walk on two legs so we could go places in public, then the next one to maintain verticality. Lather, rinse, repeat.

I think that this last year has taught Teri and me to stop waiting to be happy. We haven’t stopped struggling for improvement, or lost the desire for more comfort, be it spiritual or creature. I think what we have learned is that striving for more doesn’t mean dismissing what you have now. This last year has seen more tumult that we ever expected, yet I wouldn’t trade it for anything. I have grown closer with my wife, my faith and my family. I am blessed to have been shown what a marriage can really be, and what it feels like to be truly tested in more ways than you have ever expected. This year has been a gift, albeit a bit more dramatic than I would have like, but a gift non-the-less.

I look back at where we have come from waiting tables together at O’Neil’s. Now we have 4 kids, 9 years and more tears and laughter than I can count. I never knew how hard this would be, nor how happy I would be to be doing it with Teri. She has taught me not to let my future wanting deny me the joy of the gift what is by my side right now. It is amazing that an entire summer apart, struggling and crying good night over the phone taught us more about marriage than the previous 8 years we spent in the same physical place. Given enough focus you can put yourself wherever you want to be, and I am blessed to be here with my wife today.

Happy Ninth Anniversary, Teri.

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First clinic appt and still at home

I was so afraid, the docs were going to keep her yesterday.  But they let me take her home. Nothing was wrong at all, just my anxiety.  The appointment went great!  She behaved like an angel.  We met with the fellow cardiologist, the cardiology nurse practioner and the attending cardiologist.  They were a few concerns, but overall they though she looked great.

She has lost about 10 grams for the past 3 days…I know 10 grams is nothing. It is only .022 pounds! But for these hypopast kids, gaining weight is essential.  Overall, since she has been home, she has gained 18 grams (.044 pounds).  So, they are OK with that. If she looses any more weight today, I have to call right away.

They scheduled her for her next clinic appt in 2 weeks and at that appt, they are doing a CAT scan of her head, an ultrasound of her blood clots in her vein in her groin area, and we will meet with the neurosurgeon and the cardiology team.  She will also get labs drawn.

Grandma Colleen (Ethan’s mom) came with me and I am so glad she did!  I felt like we were packing up for a week.  She pushed the IV pole while I pushed the stroller.  It was exciting! And we certainly discovered that wearing a hat really pisses Gabi off.

They haven’t scheduled her Glenn yet. Nancy wants to wait as long as possible because of the VP shunt surgery.  She is doing well, so there is no need to rush it. They are thinking early to mid November now. They will schedule it at the next appt.

So far, we have a home nurse coming over twice a week to check her vitals and make sure we don’t have any questions. It is very reassuring. Gabi will also visit her pediatrician this Friday for a general check up.  She cannot receive any vaccinations until after her next surgery but the pediatrican can do the third and final MRSA swab to get her out of isolation when she returns to the hospital for inpatient. No more yellow gowns.yes!

Being at home is just so awesome, but I will be honest, it is exhausting and completely insane.  I just say prayers throughout the day begging for grace and God does bring me grace in ways I never expected.

Thank you G. Colleen for our first of many adventures!

Love,

Teri

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my crazy new “normal”

Our peaceful serenity has transformed to insanely busy.  Of course, I am sick with a nasty cold along with some of the kids. We are wearing hospital masks and washing our hands until they are raw and painful.

The kids have taken to Gabrielle unbelievably.  They are so happy to have her home.  The first few days were a peaceful household…everyone on their bestest behavior, helping me at my beck and call.  Now, my helpful 4 and 6 year old boys are back to tackling each other and destroying the living room. Marissa has found an awesome attitude that she has been getting away with for months now.  We’ll get it together, I know we will.

Gabrielle is soooo happy and content. She slept for almost an entire day over the weekend.  She was so peaceful and in a deep sleep that I don’t think she has ever felt before.  At the hospital, there is always someone poking her, checking her temp, blood pressure, or just talking in the background.  I think she finally feels safe.  She just watches her brothers and sister and follows all the activity.

Between daily weight checks, O2 checks, meds and injections, and trying to answer every “mom” call from the other kids, we are pretty busy.  We have an appt in Milwaukee tomorrow at the HLHS clinic. We’ll see what they say.

We are so blessed. Can’t wait for a warm day to take her for a walk.

Love,

Teri

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Serene

I am so at peace.  So joyous.  So grateful.  So full of love.

Gen. 15:1 Do not be afraid, I am your shield, your reward shall be very great.

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One Family, One Roof

We are beyond excited.

I walked in the front door carrying her free of cords and feeds. Tom’s first question, “Can the new baby walk?”

They have all taken turns helping in their own way, and I really think the kids are almost as excited as Teri and I. There was a moment when we were sitting accross the two couches and the three other kids were standing around all talking at once saying adorable kids things. I leaned back a little and cried a bit.

We are so happy.

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TODAY IS THE DAY!!

Of course, I will not believe it until we are walking out with our baby girl.  She has looked fantastic the past 2 days, so we are expecting to take her home this afternoon!! I can’t even begin to explain how excited we are to have our family all together.

We were debating whether 0r not to tell the kids she is coming home.  We hadn’t mentioned it, but little Ethan asked why Dad and I were both going to the hospital. so we told him.  He is ecstatic! He is planning on making her cards and a sign to welcome her home.  So sweet.

Unless something comes up, our next post will be written from home with Gabrielle right next to me.

Thanks for all the love and support!

Love,
Teri

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Let’s try this again…

Thursday is/could be the day Gabi gets to see the outside and ride in a car and see her home for the first time!!

She got some blood yesterday because they have to check her lovenox levels every other day right now until she is at a theraputic level.  Becuase each blood draw is a 1/2 ounce or so, her hemadocrit level was down to 35…it should be at 45-50.  So they had to put in an IV and giver her a transfusion.  All went well with the IV…thank goodness.

Neurosurgery is happy with all of the ultrasounds they did of her head and shunt.  They did several of them in the past 2 days while she is different positions (laying flat, upright…etc.). They dont’ need to see her until Nov. 6th.

She is doing great with feeds, gaining weight and no puking! her heart rate has stabilized and hangs now between 105-150.  They continue to say her Glenn will not be until late October. 

Please pray for a good week for us all!

Thank you and much much love to everyone!  Oh and congrats to cousins Carlie and Zach for their new baby girl that arrived earlier this week…God bless Charlotte Rose.

Love,

Teri

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Monday Monday

Gabi had an outstanding weekend!  She is having an ultrasound and a chest x-ray this morning. We are hoping and praying praying praying that everything looks good. They have fortified the breastmilk with Similac and so far she is tolerating it well. Big Ethan spent the weekend up there and he said he had never seen her looking so comfortable.  She loves her swing and is talking (arrr arrr arrr) and smiling a ton! We are so blessed.

Will update as soon as I get results.

Love,

Teri

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I know they’re going to mess it up

She is doing great, so that means the docs will push her once again.  She is tolerating the breastmilk wonderfully, however, she is not gaining enough weight on it alone.  So, I know that fortifying the breastmilk with formula is coming today.  Not sure what type of formula, but she needs more calories. A typical breastmilk is 20 calories per ounce, and they need her to be at least at 24 calories.  We’ll see how pukey she gets with it. They did a chest x-ray early this morning but the docs haven’t reported any results yet. They always have their x-ray and ultrasound pow wow’s at 9am in the morning. It’s actually kind of funny to see them all huddle up in this little conference room. Anyway, we are hoping there will not be any effusion collecting in the pleural cavity…that would not be good.

Overall, she is doing much better. The dose of captopril has the docs disagreeing once again.  Captopril is an ACE inhibitor that helps the heart relax lowering blood pressure but it also decreases her O2 levels.  Gabi’s blood pressure is on the high end but so are her O2 levels, so they need to find the right dose of this med. We’ll see what they say today.

We are so grateful she is doing better.  When I was talking to one of the NPs (nurse practioners) about going home, she told me that I should call the local fire dept. and local ER to give them a heads up about Gabi’s condition when she is home.  Most likely there will be an emergecny at some point and then they can have us on their radar.  She looks so great that I almost forget how serious her condition is. Crazy. We can barely take care of ourselves muchless 3 healthy kids and 1 heart kid!

Love,

Teri

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Looking up

According to Carianne and Sherry, (my favorite nurses, along with MANY others) say that Gabi is feeling better. I wish I could be there today to be able to see for myself. Good news is, she has been on the portagen-progestamil mixture of formula for 6 weeks, so she can now be switched to breastmilk!!

So far, the neurosurgeon thinks that she just needs time to get used to the shunt.  So much fluid had accumulated in her head that when it drained into her abdomen, it messed up her entire system.  That is my interpretation anyway. So we are still hopeful that the problems are option 1 from the previous post.

I have learned to do the lovenox injections and so far still suck at it.  Carianne made me do it and assured me I would thank her for it later, so far, I am still not thanking her.

overall…we think things are looking up.  Her heart rate seems to be coming down to her baseline again, between 120-165, so that is great!

Big Ethan will head up early tomorrow morning. We have first grade family fun night tonight and it would be nice if we could both be there for little Ethan.

Thanks for all the help this week to my neighbors!

Love,
Teri

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