Tag Archives | Norwood Recovery

taking names

So, when Gabi wakes up sometimes her eyes are just a slip open and I swear she is taking names to who is poking her at the moment. Today, she got poked and messed with quite a bit. Her RA line (a line that is inserted into her artery in her wrist that measures the pressure going away from her heart and into her limbs and tissues) was becoming “blanched” a term the docs used to say that there was leakage out of the line itself and it was leaking fluid and blood. It wasn’t causing her any pain, but they needed to redo her line in her foot or her other wrist. It is similiar to an IV, but more invasive. One of the resident docs tried putting a new line into her left wrist after giving her some pain meds, but couldn’t get the line in. So, the attending doc would try again in her foot later. She was fairly uncomfortable again today until the nurses finally agreed to try a new pain med. The ketamine was OK, but it only lasts an hour or so. They decided to give her droperidol that lasts for 6-8 hours. Phew. Finally she was sleeping peacefully. I asked the doc for some for me; he just laughed. He obviously thought I was kidding.

The attending came and messed with her again, but did successfully get the new RA line in her foot. Lots of silent cries that continue to break my heart. When they pulled out the old line in her wrist, the nurse was putting pressure to help stop the bleeding at the entry site, but when she let go of the gauze, blood squirted out of the wrist directly at nurse Beth!. Everyone got a good laugh, it made me a bit sick to my stomach watching my kid’s blood squirt out like that, but Gabi did get her good.

Her numbers were holding steady today…blood pressure was actually a little high because she was so mad most of the day. My friend Amy came to visit today and she was a great support as she has been through something similar with her son. As I held Gabi’s hand, Amy held mine.  Thanks for the visit Amy.

I just got home and when I walked to the front door, I saw a nice letter from a neighbor taped to our door. I was out of sad and scared tears today, but there are always an abundance of happy tears left when you read a note from a friend… AND a homemade dinner was here waiting for us. My sister was here with the kids and all was under control. We are so blessed and grateful for everyone’s kind support through all of this.

I will call everyone back and email all of those who have sent us a message as soon as I can.

Love,

Teri

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A good clean out

Like Ethan said, there was no chest closure today. I raced up to Milwaukee eager to find out the timing of the procedure. I walked into the room and the nurse, Rachel, informed me that her blood pressure had been dropping most of the morning. They had to up her Epinephrine dosage to .1. She came off ECMO on .08 and the docs needed to wean her down to about .05 to be able to close her chest. This would give them some room to be able to come back up after closing when her heart will need extra help. But she did not tolerate it today. Her blood pressure was  down to 50’s over 25 at one point. They like the mean of her blood pressure to be around 45-50 and she was hanging around 32 for most of the day. With the Epi adjustment and a dose of albumin, they were able to stablize her, but the chest closure was certainly postponed. I was completely heartbroken. Getting her chest closed is one huge step towards holding my baby girl and this was like a punch in the gut.

I was quite emotional after receiving this news and then Gabi awoke. She, for the most part, is fairly comfortable when she does wake up, but not today. It was like watching her cry through a thick pane of glass. Her mouth was wide open, chest heaving, face beat red, but she couldn’t get any noise out. She did this off and on for over 4 hours. They have learned that Gabi doesn’t tolerate adavan, and morphine doesn’t really have any affect on her, so they gave her a hefty dose of ketamine, but she was still extremely agitated.

For the first time in a while, I just cried with her and touched her where I could. I wanted to rip out all of the lines and scoop her up so desperatly. so so desperatly. There really isn’t any place to even touch her. She only has one foot that is without any lines and who wants their foot rubbed when they are uncomfortable??? She has bruises all over her body and not to mention the tape, everything is taped onto her…it looks horridly uncomfortable. I cup her head (the physical therapist told me rubbing her head can be irritating to them, so she showed me how to just cup her head in my hand and place pressure). It is the only thing I can do for her. I lean in as close as I can get and tell her everything is going be OK. over and over.

By 5:30, the surgeon came by and they decided to do some exploring. She was still extremely agitated and the anesthesiologist  came to sedate her. She finally looked comfortable. They kicked me out of the room and set up a little operating room in her room. An hour later, the surgeon told me that he was glad they opened her up again. There was some fluid pooling in there and the bandage had been on since the surgery (2 weeks ago today) and they needed to replace it. They cleaned out her chest and he had a hunch that she has some kind of infection. That might explain the blood pressure change and the way she was feeling today. They ran some cultures and now we wait for the results. Her numbers are OK now. The Epi is still up at .1 and they continue to give her albumin to maintain her volume. But she is stablized and the surgeon, Dr. Mitchell, thought they would revisit the chest closure procedure in a few days. Dr. Tweddle and Dr. Ghanayem return from their trip on Wednesday, so I am looking forward to having them back. Dr. Mitchell is just as awesome, but Tweddle is THE man.

Today, I felt like screaming “I can’t do this anymore!”  I am so tired and I am so scared. Scared of over using my mom and sister, scared of messing up my other kids, scared of loosing Gabi and hearing my husband’s teary voice on the other end of the phone 85 miles away…it was too much for me today. But then I paged through some comments left for us and one in particular got my attention. I clicked on her name and it brought me to her blog with this quote staring at me.

“When I see that the burden is beyond my strength, I do not consider or analyze it or probe into it, but I run like a child to the Heart of Jesus and say only one word to Him: ‘You can do all things.’ And then I keep silent, because I know that Jesus Himself will intervene in the matter, and as for me, instead of tormenting myself, I use that time to love Him.” –Saint Faustina

Thanks Barbara. We can do this. And so we press on…

Love,

Teri

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Peaks and Valleys

After pushing off the closure all weekend, things suddenly looked great this morning and she was scheduled as the last procedure of the afternoon for the surgeon. Teri raced up there, and made decent time to be there for the start. Before that happened Gabi’s blood pressure dropped, and it took more meds to get it back up than they would like, so the closure we were really hoping for was postponed. Right now Teri will be up there for rounds tomorrow morning and hopefully we will have some more information then. Dr. Tweddle will be back in town on July 1st, so it will be interesting to see if his arrival changes anything at all.

We were somewhat disappointed that things weren’t closed up this weekend, but were trying not to get too excited to begin with. The call this morning caught us off guard, and being surprised we probably didn’t temper our excitement as we should have.

For now it is just some more waiting and praying.

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Chest Closing Scheduled

I am really trying not to get my hopes up, but why not, right? The docs at rounds today said they would try and proceed with the chest closing this afternoon.  yesterday, they were still unsure, but today, they thought she looked ready!!  I am rushing around trying to get back up there in time.  Pray things go well for Gabi today…she has a long, difficult few days ahead of her.

Thanks for all the support everyone!

Love,

Teri

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monday morning’s schedule

Well, we got confirmation that they are definitely going to do some “exploring” tomorrow morning. Sometimes, they just need to go in and clean things up, move the tubes around, mop up old blood, change the bandage…and they will slowly try and close the chest and wait some time (20+ minutes or so)to see how she responds and then try a little more and then a little more closure. Everything depends on how well she responds. The critical care docs do not think she is quite ready for chest closure yet, but the surgeons think she is…so they will decide on the spot together.

They started her on small feeds with that special broken down formula (I forgot what it is called) to keep her stomach “in action” so to speak. The TPN and lipids go straight into her blood stream, so then her gut wouldn’t be in use. She received more blood today and additional albumin as well.  We’ll see how the rest of the evening and the night go…

We are all home now, but I am planning on heading up tomorrow morning sometime, depending on my sister and my mom’s schedules to watch the kids.

Don’t know quite how I am feeling at this point, a little overwhelmed, a little antsy, excited, sad, scared, anxious…but I have faith and keep reminding myself…one day at a time.

Love,
Teri

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Sunday morning

These posts seem to all go together…once again, there is not much new. She is hanging tough. She is receiveing more albumin and FFP to maintain a higher blood pressure. Tweeked the fentanyl and the Epi again. They will try her on the new broken down formula probably today. The TPN and lipids she is on for nutrition is giving her everything she needs, but is harder on her liver than formula or breastmilk. But of course with the damaged lymphone, the chylous drainage is just too much for them to keep her on breastmilk, for now anyway. She is still working on getting rid of all the extra fluid, the docs, of course, say possibly tomorrow for a chest closing. How many times have we heard that? But I trust them and I do want them to rush her…she is calling the shots here and the docs wait patiently for her to be ready to take that next step.

We had a nice family slumber party at the Ronald McDonald House. Thomas and Marissa sleep next to each other on the floor and by the morning, they were sound asleep on top of each other, blankets entangled. Ethan likes to have his own space…he is such a mature 6 year old. :) To the kids, coming up here is like a vacation, and I know in the many years to come, they will remember this as great family time.  Another gift Gabi has given us…

Thanks for the visit G & G last night. It was great to see you both and have you meet Gabrielle.

Love,

Teri

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Morning update…nothing new

Hi all-

We are all heading up to Milwaukee as a family again, I am so excited to see her!!  Just talked to the nurse and there is nothing that new. They gave her some more blood, even though she is producing platelets on her own and everything looks good, the docs just like to have these babies “fully stocked” with blood and fluids. They gave her more albumin for more protein and fluid in the vascular system…just maintenance, neither good nor bad. They have stopped her feeds of breastmilk still because the amount of chylous was increasing. So they will give her TPN and lipids for her nutrition until they can get her chest closed.

We’ll see what they say on rounds about closing her chest. The nurse was guessing that they will say to wait one more day.

One more thing…Happy Birthday to my dear friend Lisa!!  You have been there for me for as long as I can remember. I love you dearly and wish you were here with me through these weeks. Thanks for all of your support and I hope you have a wonderful day with your family. Love you.

Will post after rounds.

Love,

Teri

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My little peanut

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Still more waiting

The docs looked at her this morning and agreed that she is just still too swollen to close her up.  Her blood pressure continues to go up and down depending on how awake she is. Her feeds are up to 16 ml of breastmilk per hour, which is great. Her Epi is up at .07 ml per hour. They lowered her yesterday from .08 to .06 and now she is right in the middle. This game they play to perfect the numbers can get a little tiresome.But we are all holding strong and especially Gabrielle continues to fight every step of the way.

We continue to just hold steady.

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Getting closer

Baby steps have progressed to a possible chest closing as soon as this afternoon/evening!! Most likely it won’t happen today, but as we have learned, you just never know. She is holding strong and fighting this every step of the way. The chylous seems to be diminshing just a little bit. The fat in the breast milk so far is too much for her body to absorb because of the damaged lymphonic system. To combat this, they probably will switch her to a special formula where the fat and proteins are already broken down for her. They will wait until her chest is closed to make that switch because they don’t want to have to face any allergic reactions/ or stomach reactions to a new formula right now. She would stay on this formula for 6 weeks until her lymphodes can heal up. Stinks, but what are you going to do. WE are rolling with these punches now.

Her red blood cell count showed their might be a slight infection so they ran a bunch of cultures from her blood and urine to see if anything grows to prove an infection or not. She is much less swollen and they are still tweeking the meds as she needs it. Down on the Epi, down on the vent, up on others…But her numbers are all staying strong this morning.

When they do close her chest, then the “game” of tweeking meds and watching her numbers starts all over.With the chest open, there is plenty of room for her lungs to inflate and for her heart to pump. But when that chest closes, there is obviously more resistance for her heart and lungs to work against, so it will be another critical time for her a day or so after they close her up. But then she will be on her way to healing and that much clsoer for her Mama to hold her!!!!

Hopefully I will be able to post a chest closing schedule today!

Love,

Teri

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More meds

They are still tweeking all of her meds. Their short term goal is to get  her chest closed. She was so awake today that she became too uncomfortable and that changes her oxygen levels and all of her numbers, so they put her on a Katamine drip to help her stay more sedated.

She spit up a large amount twice today, so they pulled back on the breastmilk feeds to half the amount. She had hiccups a few times today that looked excruciatingly painful. She tried so hard to cry but being intubated, she can’t. Her grimaced face told me all I needed to know, so I got the nurse to make her more comfortable.

I love seeing her beautiful big blue eyes staring up at me but at the same time, I just want her to be comfortable, so I tell her to go back to sleep. Like the rest of my children, she didn’t listen to me at all.  I sat next to her holding her hand for hours today and she held my hand back. It is really frightening to get so attached to her because her life , and all of our lives, are in God’s hands. It is scary to love your family so much … to allow your self to be so vulnerable. But I need to feel her and love herbecause without hurting , there is no learning and no trust and that would lead to a very empty life. As I watch her numbers fluctuate and hear the alarms go off when her oxygen levels get too low, I have faith that God will show us all the way.

I am very tired and very emotional tonight. Thanks for your all of your prayers…

Love,

Teri

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Slooowly improving

One of the concerns during the surgery is that they don’t nic any other tissue that may get in the way. One of the things that does get in their way is a lymphode that helps the body absorb food. Another one, more serious concern, is the vocal cord nerve that rests right where the docs had to cut the aorta. If they do hit this nerve, unintentionally, then one of her vocal cords could be damaged and possibly paralyzed, which would effect her eating and talking. We won’t know if this was damaged until she is extabated in a few weeks.

But now that she is getting feeds of breasmilk through the feeding tube, they can tell if that specifc lymphode was damaged. And in Gabi’s sake, it was. They can tell by the fluid in the drainage tubes coming from her chest. It is called chylous. It is a milky substance that is the fat from the milk that is not being absorbed by her body. Here is the definition.

chyle[kahyl] Show IPA

–noun

a milky fluid containing emulsified fat and other products of digestion, formed from the chyme in the small intestine and conveyed by the lacteals and the thoracic duct to the veins.

She will most likely heal herself from this, but it could cause other complications. And this does slow down the closing of the chest.  I hope I explained that correctly, I find it to be a bit confusing.

One of the med students during rounds said “Gabi was doing well.” and the attending doc corrected her and said, “I wouldn’t toss that term ‘well’ out there. She still has an open chest more than a week after surgery and she is still edema (very swollen). I would say more like she is slowly improving.” Still good that she is improving, but difficult to hear.

We are all pretty exhausted from maintaining this schedule. There really is no easy way to do this. If I am here, I am just trying to appreciate the time I have with Gabi but then I have the other kids to think about. When I am at home, Gabi is always on my mind. Please keep praying for us to have strength and persevere through this time. Gabi is a fighter. She had the hiccups again this morning and I can tell she was so uncomfortable, but she fought through them. We can do this for her and I can do this  for my husband and for my children.

Love,

Teri

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Quiet Afternoon

Gabi had a quiet afternoon. Her numbers are much more stable and the swelling has definitly gone down quite a bit.
They have begun to do feeds through her Gtube, which is a tube that goes through her nose and leads down to her tummy. They are feeding her 10 ml of breastmilk an hour and so far she is tolerating it really well. It makes me feel so good that she is getting nutrients and immunities now. She is still getting the lipids (fats) and the TPN, which is a mix of potassium, magnesium, calcium, protein…not sure what else.
Hopefully during rounds tomorrow morning, the docs can try and schedule a possible chest closing date. The nurses seem to think it will be soon.
Hope everyone is staying cool…
Many blessings to everyone
Love,
Teri

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Perseverance

She had a quiet night and morning…which is great!   They think the fluctuation in her numbers might have been due to the amount of drainage from her chest. The discharge has been decreasing, but it was still a lot. This might cause her to dry up a little in her vascular system, so they are continuing with FFP (fresh frozen plasma) and the albumin (protein solution) to help build up her blood.

She has had a nasty blister behind her knee that did finally pop. It looks so so so painful. It is just from her sweating and laying in bed. They are treating it with antibiotics and bandages. But every time they try and straighten out her leg, she pulls it back, so they know it is causing her discomfort. Poor thing.

I am heading back up in a few minutes, so I will update more in a few hours. By then the docs would have been to her on their rounds so hopefully we’ll get an update as far their plans for her.

Thanks for all of your support!!!. The dinners, gift cards, emails, financial donations to help with medical bills, help with babysitting. NOTHING has been overlooked and I promise to get in touch with everyone soon. Everyone’s thoughtfulness has been carrying us through this.

Love,

Teri

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still a bit of a struggle

Gabi has had kind of a rough afternoon. Her numbers are still fluctuating quite a bit and they can’t quite figure out why. Her blood work looked good and her cultures came back normal, which means her cell count is good and there is no infection. Great news, but the docs are still just trying to figure out what is normal for Gabi. So, because of this, they do not want to schedule the chest closing as of yet. Disappointing, but she is still hanging in there.

Can’t wait to see her tomorrow, although it is so difficult leaving home.

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Rough evening but improving

Gabi had kind of a rough early evening last night. her blood pressure dropped and her oxygen sats lowered into the 60’s for a brief time. Normally, our oxygen levels are 98-100% but in Gabi’s sake, they are thriled with about 80% meaning that her body and lungs are oxygenated at 80%. Her heart would have to work so hard to maintain anything higher than that. But through the night, they managed to stabilize her levels by adjusting her meds and sedating her a little more. But the phone call last night before we went to bed made us realize how critical she still is and everything can change in just moments. It made for a tough end to Father’s Day, BUT we are so thankful she is doing better.

She is peeing great which is wonderful news.  Her fluids are in the negative, which means more is coming out then in, which is good because of all of the swelling. So she is hanging strong still. The docs will talk today about a possible date for closing her chest.

love,
Teri

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Great Weekend

I will never take having my family together for granted ever again. The 4 kids were together for about 10 minutes and it was like my life was complete for those few moments. The weekend was awesome having the kids up in Milwaukee. We went back and forth MANY times about whether or not the kids should see her. The cardiac unit is quite overwhelming with a lot of sick kids. But we talked with the child life therapist on staff at the hospital and we decided it was better for the kids to see her than not to.And they did great!  Ethan asked what each of the IV’s were and even helped the nurses with the drainage tubes. Marissa just kept saying “that’s my baby sister.” Thomas did get a little teary when we had to leave and he wanted Gabi to come home with us. But a promise of an ice cream treat did the trick to cheer him up. They each drew a picture for her and hung it up on her bedside. And we brought a picture of the 3 of them to hang on her bed also. I know we made the right decision.

Gabi is doing great. It is (and has been, I suppose) heartwrenching to see her chest open. But she has been so heavily sedated, I knew she didn’t feel anything. But now as she begins to wake up and try to move her arms and legs, you can tell she is quite uncomfortable. Her eyes open quite frequently and to see those big blues staring at me so helpless is so difficult. I was in there last night around 9:30 and she became too awake, so the nurses gave her some morphine convinved that it would knock her out. But the morphine had practically no effect on my strong girl!  They then gave her some adavan to help with the anxiety. It still took her about an hour to settle down.

It is important for her to wake up and move her muscles around to get the fluids moving and her muscles working. But she seems to wake up too much at times. A good thing is that her numbers stay stable when she does wake up. Some kids’ numbers plummet and others skyrocket, but hers are holding steady, which is great news!!

She is starting to show signs of withdrawal from all the narcotics she has been on. She was trembling and hiccupping this morning. It looks excruciatingly painful when her little body jerks and trembles with an open chest. Poor little girl.

The docs are talking about Tuesday or Wednesday to close up her chest. They just need to wait until more of the swelling goes down. Then it is another few days of waiting and watching closely. With the chest open, her heart isn’t under pressure like it will be when the chest is closed. So her heart will have to work a bit harder when it is closed up. They contiue to tweek her heart meds and blood pressure meds as they see fit.

We are home now. I plan to go back up to Milwaukee on Tuesday. It is heartbreaking leaving her, but the nurses take such great care of her. They even made a little Fathers Day present for Ethan with a sweet poem and her little hanprints.

Below are some pictures. Some of them are a little graphic, so if you don’t want to look, don’t scroll down. Click on the picture to make it bigger.

We love you all!!!  Thanks for your continued support. Happy Fathers Day to all our wonderful Daddies.

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Waking up

She is starting to really wake up now. Her toes and fingers are flinching and I can see her trying so hard to open her eyes when I talk to her, but she just isn’t awake enough. Her head shifted just a little and her little lips are are starting to move. The nurses and docs are pleased with all of her numbers and stats, so we continue to get good news! GO GABI GO!!

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Strength

Even though Gabi is doing well, I gaze at her from across the room or over her bedside and think how am I going to keep this up for the next few months/years…I don’t know how we can maintain this schedule of traveling back and forth. It is exhausting for everyone involved. With the rain and miserable weather, my mother dealt with the kids boredom and crabbiness. Ethan has to go to work and I  sit here more than an hour away in a completely different world.

It is too overwhelming to think about our schedules. Right now, I have a plan until Sunday. And then we’ll make the plan for the next few days and then the next. To think how exhausting this is going to be is just too much sometimes. But patience, more patience and trust in God that he will give us the strength somehow to keep fighting.

I love this comment from our MN cousin. “Because true courage only comes when you have no other choice but to get up in the morning and face what needs to be faced. You do it for your children, you do it for the undying love so many have for you. ” This is EXACTLY what I needed to hear today. Thanks Amy. We will get through this and Gabi will get through this.

She is still holding strong and the docs are still tweeking meds. Her blood pressure is maintaining well and her heart rate is hanging on at about 150-155…which is right where they want it.

One more thing: for some reason, the computer here at the hospital will not let me send emails .I have been trying to send out some emails today, but couldn’t send them. Very frustrating. So I am sorry I still haven’t responded to many people’s voicemails and emails. I am getting them all and loving them so very much. They are indeed carrying us through this.

I can’t wait to see Ethan and the kids tomorrow. We MIGHT get our first family picture with all 4 kids!!!

Love, Teri

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Bath Time

I got to help the nurses give her a little sponge bath. It was difficult moving around all the lines going into her, but it was so awesome to be able to changer her diaper and touch her skin. She is so swollen she looks like a linebacker.  But she is hanging strong.

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Plans for today

I stood amongst about 10 docs all with their lab tops on pushable carts standing in the doorway of Gabi’s room. I felt like I was on the set of ER. The craziest part of listening to them all was that I actually understood some of what they were talking about.

They are still tweeking meds. Taking some meds away and adding new ones, all pretty standard. She has significant drainage from her open chest, so they will continue to give her the volume. It is called albumin and basically it is a protein solution that stays within her vascular system. If they just gave her regular IV or saline solution, most of that would leak out into her body and then she would become more swollen. This albumin stays within her arteries and veins to mix with her blood. They may try adding FFP (fresh frozen plasma) to her blood but so far she doesn’t need that.

They will begin weaning her off the ventilator, although they are still looking at about 2 weeks to stay on the breathing tube. They are taking her off the vecurim (sp?) which is the paralyzing meds, so hopefully by later today or tonight, she will start to flinch her toes and possbly open her eyes again. Amazing. Of course, the sedatives are still so strong, she won’t feel the pain.

I loved on rounds, one of the most amazing docs here, Dr. Nancy Ghanayem asked one of the med students, “What is the most significant change in Gabi that you know she is recovering?” I just loved that question. The poor med student was sweating as he was trying to come up with the answer. It was something about the UVC lines. I didn’t even care what the answer was…the word RECOVERING was all I cared about. I got chills up my spine. 

The physical therapist (who if I forgot to tell you, Ethan, is our sandwich friend that we met when we were trying to find our way from the disgusting skyway deli). Funny story. Anyway, she is going to come and massage Gabi’s muscles and teach me some techniques to give her muscles a little movement. This will benefit her in many ways.

Still a long road ahead, but as they say here… baby steps. Gabi, through God’s amazing work,  is certainly teaching me a lesson in patience. The docs try one thing and I ask “now what?” and they respond…we wait. But, I am not good at waiting!! 

Thanks for your continued support through all of this. Many blessings to all of you.

Love,

Teri

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Difficult night

Her blood pressure dropped significantly in the middle of the night. They are not sure why but she is doing much better this morning. They tweeked her meds more and shifted her position several times. She is loosing a lot of fluid from the drainage tubes, so they think she may have been kind of “dried out”. That is not they term they used…it’s my interpretation. They are giving her lots of volume to sustain the arteries and veins at this point, but it seems to be fairly standard.

She is off the Norepinephrine completely and the Epinephrine is down to about half the dose, so her heart is kicking in like it should be…they are just watching that blood pressure like crazy. Head ultrasound indicated the bleeding has completely broken up and it is not a concern anymore.

She is staying strong. Thats my girl!!  I don’t want to miss rounds, so I will update again soon.

Love,
Teri

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Tweeking the meds

Today has been awesome! She is still off the ECMO…10+ hours and counting. It has been a real testing period for Gabrielle and she is holding strong!  That’s my brave girl!  She is like an angel laying that in her little hospital bassinet.  The first time I saw through the bandage in front of her heart a few days ago, the nurses covered up the open chest because it was too much to bear. But now, it is uncovered and I have no problem looking at that little heart beating away. It is a miracle!! 

Right now, the docs are tweeking all the meds to try and find what is “normal” for Gabi. Her blood pressure is a little low, but not alarmingly so. Her heart rate is high hanging right around 182, which is “as expected” given how hard her heart is working. She is on 2 heart medications that are helping her heart stay strong: Epinephrine and Norepinephrine. Basically, they are like adrenalyn (sp?). She is also on a calcium drip, furosemide and fentanyl and vecuronium are the sedation meds and chemically paraylzing her. They will start to reduce the paralyzation meds possibly sometime tonight or tomorrow am. They need to see her at an absoulte resting place so they can tweek everything and figure out what is normal for her.

Her heart is ejecting blood and the flow with the shunt is doing great. Dr. Tweddle (our amazing surgeon) loosened up the shunt a bit during the procedure this morning. He compared it to a long balloon that you can use to make animals, like wrapping a rubber band around one to tweek exactly the amount of flow you want going through. He was happy with what he saw after loosening that a bit. Like Ethan said, the bleeding in the brain( a complication of the ECMO) has diminished and it is no longer a risk.They will do more head ultrasounds through her soft spot through the next few days to ensure no blood or fluid returns.

The left lung continues to drain the fluid that built up. The drainage from the actual surgery is slowing down, so that is great. She is quite swollen, kind of looks like a football player right now, but that is normal and she will pee off all that excess fluid in the next few days.

The next steps are to make sure the heart is stable: blood pressure, rate…I forgot everythign else the nurse said. After that; the next step would be to get the swelling down and then they will discuss closing her chest. This will probably be in about 4-6 days, then they will take her off the ventilator (breathing tube) to let her lungs take over fully.

I hope my amateur medical explanations are accurate. I have learned so much, but then to have to re-explain things is questionable. But the nursese are so patient and the docs and the whole team sit with me and answer all of my millions of questions.

That’s it for now. She is doing awesome!!  Praise God, for she is our little miracle.

Love you all,

Teri

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Progress

Her heart is still pumping away. There was some fluid in her lung that they cleared during this morning’s exploration, and continue to drain. They think that might have contributed to her past troubles, and clearing it out should help things to continue to move in a positive direction. The radiologist is there to do a head scan, they see signs that the bleeding in the head has decreased, and are trying to confirm that. Things are really coming up Millhouse at this point, and we couldn’t be happier. If things continue in this direction I think we are 3 or 4 days away from closing her chest, which is our new milestone. Pretty crazy that such a thing as closing an infant’s chest is a celebration and not some horror movie. My father told me of a study where a person would wear glasses that would make everything appear upside down. It took less then 24 hours for the subject’s brain to turn the visual world right side up.

I think that is what God is doing for Teri and I. Giving us the ability to really see good where it is, beyond what we used to think of as normal.

UPDATE:

No more bleeding in the brain. Teri will meet with the Doctors soon to get a full rundown of  where things are going next, and see how all of the new developments shape the rest of the week.

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A good day: Off the ECMO

Teri arrived at Gabis’ room just as they were cleaning up. There was substantially more room since THE ECMO MACHINE ISN’T IN THERE!!!

Gabi’s heart is beating on it’s own and everything is looking pretty good. Teri just called me with quick update, and I wanted to get the word out as soon as possible. I will update this post with more details as I get them.

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Toes flinched

I talked with my mom who has been sitting with her all day. She actually got to see her toes flinch when the nurse tickled them.  The nurses were playing her lullabies in the background as the paralyzation wears off. I can’t wait to see her.

Everything else is holding strong.

My husband is the best, isn’t he?

Thank you all for your continued support. I finally got to read most of the comments from the past week and I promise to respiond to each one of you. We are truly blessed.

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Things learned from a 8 day old

It is interesting to see how much I have learned from Gabrielle in just a short time. When people go through rough times they say it was a gift, and I always thought it was kind of a cliche. Gabrielle has taught me to not be so jaded.

Leaving Teri at the hospital last week was one of the most painful things that I have ever done. Teri was in physical and emotional pain as I left her with only a sick child to think about. It took me a while to get out of the parking garage, and more than once I almost turned around on the expressway. As I kept driving I realized all of the distractions of the world fell away. The personal baggage, the kids, all the physical odds and ends really faded back, and all that is left is how I really feel about my wife. I realized on that long ride back from Wisconsin what it really feels like to love your wife. So much that you will leave her alone and know you will all make it. It is not something I had ever felt before, it was something I had known about, but to feel it that deeply was a new gift.

As I made grilled cheese sandwiches (with jelly on top thanks to a stay with Grandma Colleen) I looked at the children sitting eagerly at the table. I was now truly grateful for the 3 healthy kids I have already been blessed with. I remember when I used to ride/race bikes and would sometimes have a bad crash. The shower afterwords was always pretty painful, and I would think to myself that I took yesterday’s pain-free shower for granted. A few days later things would heal/scab over and soap wasn’t as fearful, and I would really enjoy showers again for a while. God has given me a spiritual crash in baby Gabrielle, and as God heals her He also heals me.

That is Gabrielle’s gift to me, and I can’t wait to thank her.

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Quick Update

I just talked with one of Gabi’s nurses. She is holding steady still. They took her off the paralyzing medicine and she actually opened her eyes. The medication was supposed to take 24 hours to wear off, but she opened her eyes within 10 hours. I knew she was fiesty when she ripped out her O2 tubes several times, so I know she is fighting this.  The nurse said she has some bleeding in her head (a side effect from the ECMO). They grade the bleeding on a scale from 1 to 4, 4 being the worst. She is holding steady at just 1, which is still good, they are just monitoring that like crazy. There are many neurologic tests they will do on her once that paralyzation starts to wear off. They look for muscles twitching, dilation of the pupils and I forgot the many others.

They tried turning the ECMO maching down to 400 (she has been at 500 since the surgery) and her heart did show some signs of ejecting the blood through her arteries and veins, which is a great sign. Tomorrow in the morning they are going to open her back up and turn the ECMO machine way down to 200, watch her heart actually start beating and possible turn the machines off if her heart responds well. That’s what we are obviously hoping for and if she doesn’t respond well, then that will be a different conversation.

I am heading up to Milwaukee probably tomorrow morning to be there after the surgical exporation is finished. This back and forth is going to be a rough go for the next few months. But we will all hang in there and survive this. Nice to catch up with some of you today.

Thanks for all the continued support. They are certainly carrying us all through this uncertain time. Our faith is strong and I love my husband more today than I ever have, so I know we will all be OK, whatever does happen.

Love,
Teri

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Holding Steady

Well we are home and I am just loving my kids right now. We picked them up from G & G Danstrom’s and they all gently tackled me.  It was awesome. G. Colleen looked pretty warn out. She kept them busy while we were gone. And she and G. Ruth got our carpets cleaned while we were out of the house for a few days. Shelly was here,  moved the furniture back in its place and did the rest of our laundry, and a neighbor brought us a dinner. Talk about wonderful friends and family!

I talked to one of Gabi’s nurses and she said there is not much going on. She is holding steady, they gave her more lasix to help her pee off some of the swelling from surgery. Her chest is still open until the swelling goes down. It is bandaged up with clear tape so you can actually see her heart through the opening that is about the size of a small apple. They do a head ultrasound every few hours to ensure there is no bleeding or seizures or strokes. She is still fully sedated and chemically paralyzed so hopefully she doesn’t know we are not physically there with her right now. But I know her guardian angel is watching over her and that everyone’s prayers are carrying her through this.

I am so blown away by all of the comments and voicemails and emails I have received in the past few days. Thank you all for your continued support. I promise to get back to each one of you soon. We are truly blessed to have friends and family to support us like this.

We have already met some truly wonderful friends through this rollercoaster. A young couple was just going home with their son after an almost 3 month hospital stay. Another family next door to us in the hospital has a daughter that was born in May that has been on and off ECMO and had another surgery today. Both of their children have HLHS. I am certain we will keep in touch with them. Life here as we know it is so fragile and we have already learned so much this past week and I know Gabi has more lessons for us in the near future.

We have more pictures although they are a bit graphic. Ethan will post them tomorrow.

Love,Teri

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Tuesday update

She is still on ECMO. We just talked to the doctors and they are just letting her rest today and probably tomorrow. The machines she is attached to are just unbelievably overwhelming. She has 2 nurses that constantly at her side checking and rechecking and even putting chap stick on her little lips. As she lays there and appears lifeless, we know she is still fighting.

The doc checked the elecrticity and flow of her heart and all looks good, it is just the muscle that needs to rest. They are hoping that Gabi will give them a sign when to take her off the ECMO. They watch the arterial lines monitor for any signs of more pressure in the arteries, which means her heart could be ready to take over on its own. If they don’t see that sign soon, they will try and turn the ECMO down to see if her heart will kick in on its own. This will happen in the next 2-3 days.  If her heart does not take over, they will continue to let her rest for a few more days. The complications of being on ECMO could be quite serious so if nothing happens within about 5 -7 days, then we will look at our options.  The doc didn’t want to discuss those options as of yet…he didn’t want us to get ahead of ourselves. So we continue to pray that Gabi will give them a sign she is done with her rest and her little heart will take over.

We are heading home for a day or so and I cannot tell you how excited I am to see Ethan Thomas and Marissa. I know it may sound silly but I am so excited to be able to come home and take have Big Ethan take Little Ethan for his first tee-ball practice tonight.  I am so thankful my mom is going to come and sit with Gabi so she doesn’t have to be by herself.

Love,

Teri

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Quick wrapup

She is on ecmo (life support) which happens 14% of the time. Dr. Tweddle said he was surprised at needing support because she was doing well and the follow up echo showed pretty good circulation.

This was really what we were hoping would not happen, but everybody is hopeful things can turn around with some rest for Gabrielle’s heart.

Thanks to all of you for your prayers. We are still hopeful for a good outcome, just more rolling hills than expected.

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Ecmo

Her heart wasn’t quite strong enough. They are putting her on ecmo for a couple of days to let her heart heal and rest.

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