ER trip

We were back in the ER tonight. Tehilla's scar had turned red and started swelling yesterday and today. 

We sent Dr. Erez the picture of her chest and he had us come to the ER. By the time, he responded, we got there and one of the surgeons saw us, the redness had gone down to light purple and they weren't as worried. They took her vitals and did a blood test. 

The blood test came back with a very slight elevation. They sent us home, but we are to come back if anything changes or gets worse. And we redo the blood test in 2 days. 

Home again.

Four Weeks Old

Tehilla is four weeks old! After Sunday's scare, we have had two great days. It has felt like "normal newborn" kind of days, with Tehilla loving her swing, playing on her playmat, and us going for nice walks with the stroller. Half a heart? Go figure. 

A-OK

Tehilla's blood work came back clean. No infection. They sent us for an x-ray of her leg to make sure it wasn't a calcium deposit- it's not. 

Her leg just has damaged tissue that will heal over time. As for her non-stop crying, it's possible that she has some pain from all her various reasons. If we see that she is crying incessantly and nothing else soothes her, give her Tylenol.

Thank G-d.

ER

We went to our appointment with the nutritionist. Tehilla went up in weight to 2.794, her birth weight. The plan is to keep going with the Monogan and Polycose. 

After the appointment, I went to see Dr. Erez's nurse, Ifat. Tehilla had cried the entire Shabbat. As well, her left foot had had an IV during surgery and had been bruised. It looked a bit red and swollen to me. Ifat sent us to see Dr. Golander, one of the cardiologists, who is also a pediatrician. He was concerned about her leg. He said it could either be damaged tissue from the IV that would eventually heal, or the skin was infected. 

So, he sent us to the ER for a blood test. We are being sent to a ward for the blood test. If it is an infection, we will be readmitted to the hospital. 

Interstage

We are now home and trying to adjust to our new way of life. We are three weeks post Norwood. Tehilla's next surgery, the Glenn, will be between age 3 and 6 months. The stage between these two surgeries is called interstage.

While the Norwood surgery essentially allows her to live and breath, it comes with its limitations. Please see the page "What is HLHS?" to understand these procedures. Her heart functionality is limited and we have to insure that she doesn't stress her heart out too much.

As well, she is immunosuppressant. Her body isn't strong enough to fight much. Even the slightest sickness can quickly turn dangerous and, G-d forbid, even fatal. 

Because of all of that, interstage can be a very difficult time. Before we left the hospital we were retrained in CPR and given instructions of what to do in various situations. We can not take her on buses or to crowded places. To limit her exposure to germs, we won't be having anyone over at our home, outside of family. It may feel extreme, but it is necessary with a medically fragile baby. 

Right now, Tehilla is on two medications: Aspirin for her heart, which she will take for the rest of her life, and Fusid, for her urine output. She also has to keep taking Monogan formula for the next month, mixed with some Polycose, to help her gain weight. 

Tomorrow, we have an appointment at the hospital with Tehilla's dietician, to make sure she has gained weight and make adjustments if necessary. 

Since we have been home, Tehilla has been getting a lot of love and attention from her brother and sister. She has also been extremely fussy. 

Our beds!

Today was a very full day and there is a lot to update about, but for now, we're all enjoying sleeping in our own beds.

We're going home!

Tehilla went up 85 grams! Her chest x-ray was clean. She just had her echo cardiogram with Dr. Golander, one of the amazing cardiologists here. After the echo, he turned to me and said,

"Well, you know, she won't be able to be a lawyer."

"Why is that?"

"She's got a good heart."

So, her Norwood surgery was successful and after 3 1/2 weeks in the hospital, Tehilla is kicking some CHD (congenital heart defect) butt.

We still have a long journey ahead of us, but for now, we're going home. 

Maybe

We may go home tomorrow. Dr. Erez wants to see that her weight goes up some more tomorrow. Tehilla will also be sent for an echo cardiogram and an X-ray. If all goes well...

In the mean time, they transferred us to a private room. It is such an improvement. In the big room we were in before, there was constant screaming children, and babies crying. This room is so nice and quiet, that as soon as we moved here, Tehilla and I both fell asleep. 

Up

Tehilla went up 10 grams! She has also been eating a lot more. Last night, she ate 70cc.

One of our pediatricians came in to see her and was very happy. He said if she kept gaining then we would be discharged. 

Dr. Erez gets the final word on everything, so we need to wait to hear what he says.

Tehilla smiles. Milestone-shmilestones...she definitely smiles. Here is a picture of her smile that I just missed.  Wouldn't you smile if you were (G-d willing) going home for the first time?

Fat Thoughts

Tehilla has been eating mostly pretty well. At most of her meals she eats between 40-50cc. Her eating is no longer a problem.

The problem we face is that she keeps losing weight. It is a normal response of the body after surgery. But until they see that her body has recouped completely and she is starting to go up in weight, we can't go home. At birth, she weighed 2.790 kg. Today, our little warrior weighed in at 2.615 kg.  The nutritionists are hard at work trying to fatten her up. 

So, please, think fat thoughts! 

Rockin' the Scar

Tehilla had her feeding tube removed! She ate 47cc at her last meal! I had stopped using the feeding tube after an incident with a nurse yesterday. I had also realized that the feeding tube would be on a drip for an hour, so by the time it was her next feeding she wasn't hungry enough. She has been moved up to 60cc a feeding and what she doesn't eat I drip into her mouth slowly with a syringe. 

Tehilla has gone down in weight, so they will be adding to her Monogan formula something with glucose to raise her calories. 

Tehilla just had her stitches removed. You can see the top of her heart warrior scar in the picture.

They have mentioned that we will probably be discharged from the hospital on Thursday!

Pretty Please

Moving to this ward was an adjustment. After a bad mishap with an inadequate nurse, I found one of the cardiologists on our team.

The only reason we are still here is because of her eating. He gave us our goal. When she is eating 50-60cc on her own without the feeding tube, then we will go home. 

Well, Tehilla heard the pleas of her mother and ate 45cc at the next feeding. The feeding after that she ate 38cc. G-d bless her.

After that, one of the pediatricians from our team came to check on her. I told him about her eating and he said, "Get her to 50cc, and you're on your way." He stayed to answer a bunch of my questions about Tehilla's care at home. 

Transferred

We were just transferred. Yes, it felt fast for me too. It feels like we just went from first class to the luggage compartment. Before Tehilla had her own room with a nurse that we sometimes shared with another room and a full staff of doctors constantly attending to her and up to 7 other patients. I had my own little room outside of the PICU with a bed, closet and night table. 

We are now in a great big communal room with 7 other patients and 2 nurses separated only by curtains. I have a pull out chair/bed, next to her.  There is no privacy and there is constant noise. We have been reunited with a "sunshine" of a child that we had the "pleasure" of meeting in the PICU. This boy spits out his medicine, pulls out his IVs and screams from dawn until dusk. Before there was a door. 

I'm going to click my heels together and remind myself it's only supposed to be for no more than a week...

And then home. 

Morning of Promise

A few of the doctors came around just now. They are planning on taking Tehilla's chest tube out today. The plan is to keep her on formula for several weeks more, to make sure the fluid doesn't come back. 

They are also talking about transferring us. Except for the two days before Tehilla's Norwood surgery, when she was in the NICU, we have been in the PICU this entire time. They would transfer us to the post-op children's ward. It is part of the step-down process. The point of sending us there is that Tehilla would still be under medical attention, but far less. I would be the primary caregiver, as opposed to in the PICU, where the nurses are the primary caregivers and I just assist. The purpose of it, is more to prepare me for going home than with anything else. It's expected, barring any complications that we would be there less than a week. 

Dr. Erez is the one who would have to sign off on us being transferred, so we'll see what he has to say. 

Nice Shabbat

Tehilla and I had a nice Shabbat, joined last minute by my brother. 

Tehilla has been eating nicely today. At her feedings, she ate 25cc, 20cc and 27cc from a 50cc bottle. She's made a lot of progress. Today we noticed a bad cut on her tongue, probably from when she was intubated. They are putting ointment on it. 

The doctors told me they plan on taking out her chest tube tomorrow morning! G-d willing, it will be a good start to hopefully a great week.

Eating Well

The fluid has almost completely stopped from Tehilla's chest, and they are discussing removing her chest tube.

She is now getting 50cc of formula and this morning she ate 20cc by mouth! Thank G-d, she is making very good progress with her feedings. 

She occasionally has a problem where her oxygen saturation dips down very low and they have to put an oxygen tube near her. 

Here she is with Ron.

Doing well

We have been increasing Tehilla's feeds every third meal. Right now, she is getting 35cc every meal. The goal is to get her to 50cc. Once she is eating at least half of that by mouth, they will take out her feeding tube. 

The formula is doing the trick. The fluids being drained from her chest have severely decreased and are translucent.

She has been doing well. Thank G-d. 

Fighter Spirit

I know that Tehilla is only 15 days old and only a baby. So, maybe it's just in my head, or maybe I have cabin fever. But this kid loves to prove people wrong. It's like a sense of humor that she shouldn't have yet. 

One minute the doctors will mention how she isn't peeing enough, so she'll go and pee at the most in opportune time. 

Or, right now, I walked in and the nurse was in middle of telling the doctor how she won't eat the formula by mouth, and they'll have to only give it through feeding tube. I asked if I could try with her, and not only did she eat the entire bottle but we were able to increase her formula by 5cc. 

Her oxygen saturation will go too low, so they give her a little oxygen, only for them to turn their backs to walk out of the room and her oxygen will go too high, so they have to turn it off. 

It's like a fighter spirit she has in her, to not let anyone set her limits. 

Calm

Today is starting off better. Yesterday, Tehilla was hysterically crying when not on Morphine or Oxycode. She clearly was in pain and uncomfortable from something and wouldn't eat by bottle. The doctors and nurses had thoroughly looked for any possible causes, other than being 12 days after open heart surgery and her mostly unswollen arm and chest and hadn't found anything. They assumed it was probably still from her arm. 

Today, she is calmer, eating better and does not appear to be in pain. 

She has been switched to formula for the time being, due to a fat in breast milk interfering with lymph nodes in her chest. 

Feedings

This morning, when I walked in, we had a nurse that we hadn't had before. She said to me, "Is this THE Tehilla that I've been saying Tehillim for?" 

Tehilla took milk by mouth last night and they are slowly raising the amount. When she doesn't finish a bottle, they give her the rest through the feeding tube.

Today's feedings haven't been very successful. They believe that Tehilla is in pain, although they can't determine, exactly from what. They gave her Tylenol and then Morphine. 

Here is a picture of her getting bathed by some of our wonderful nurses.

Also, thank you to Ayelet and Noa, some extended family, for helping decorate Tehilla's wall. The nurses hung the pictures up right away.

Slow and Steady

They have fed Tehilla 10cc of milk every 3 hours without a problem, thank G-d. Next feeding they will move her up to 15cc.  She has remained stable so far.

They had to put an infusion in her head. They had already tried several times over since we've been here, all other places. It is less likely that the infusion will fall out from her head, as there is less movement. 

Her chest tube is still draining. The fluid coming out has started to look cloudy. They are waiting to see if it goes back to translucent in the next few days. There is a chance that it could be happening due to a protein in breast milk. If it doesn't change, they will have to switch Tehilla to formula.

Bring on the...

They're professional advice was that she needs a tan. Well, they made me laugh...

Rough Night

I was asked to sleep on an arm chair in the room with Tehilla, as they were short staffed. So, I didn't sleep at all, and neither did Tehilla. 

She cried the whole night and wouldn't be settled. At her 5:00am feeding she threw up all her milk and they realized that her infusion line was out of the vein and now her entire left side of her chest and arm are incredibly swollen. Which explains all the crying.

She was given Tylenol for the pain and has cold compresses to take down the swelling. They also put in a feeding tube. They gave her 5cc of milk with a bottle before, and she was fine. They are going to do that again soon and if it goes well then they will continue to try to feed her by mouth. If not, then they will feed her by feeding tube.

Pictures

Here is a picture of Tehilla drinking from a bottle. She wasn't happy that I photographed her trying to burp. 

Bottle Work

Tehilla has been given 10-20 cc of my milk every three hours. She is only allowed to eat for 20 minutes at a time, so as not to stress her out. She only eats about 5-8 cc. It's a start and it will take time until we get her eating nicely and more than that. 

Pacifier Success

Tehilla finally sucked on the pacifier! Just at the right time too, because they plan on feeding her today.

Praise

When I was 17 weeks pregnant with Tehilla, we heard for the first time the words: Hypoplastic Left Heart Syndrome. The words came crashing down on us, and we were left paralyzed by the diagnosis. We were very much alone, floundering in a sea of medical terms and a horrifying decision to make. We found fellow "heart mamas and heart dads" online who helped us decipher the information and find proper resources. 

These heart mamas advised me to start a blog, like they all did. It was to be used to update family and friends of our heart warrior's progress.  

So, I did. I started this blog and started writing, as a release for myself, and kept the blog closed to the public. With each update, I put a little more design into the blog, knowing that with many of the preliminary tests we did, I might never be able to publish the blog.

But thank G-d, Tehilla is now a week and a half old, and this blog went public the day she was born.

We prayed that Hashem help keep this baby alive and she would be a source of praise for Him.

This blog has now had over 30,000 views. People are reading about Tehilla in Israel, USA, Canada, Australia, Italy, Spain, Germany, Chile, Norway, Belgium, France, South Africa, Switzerland, and Netherlands. 

We've been contacted by people from all over, and have been told about Tehillim groups that have been set up for our little girl, all over the globe. Challah groups, as well. 

We are in complete awe. 

Peaceful Shabbat

This Shabbat was very special for us. Ron's boss very thoughtfully and wonderfully gifted all of us Shabbat at the Hadassah Hotel, next to the hospital. My husband, our kids and I slept and ate there. While, of course, we weren't all together, we were able to get some much needed family time and frequently check and spend time with Tehilla. One nurse even let my 7 year old daughter run in for a half a minute to see Tehilla. We went into Shabbat more relaxed than we've been since we got Tehilla's prenatal diagnosis of HLHS, knowing that Tehilla was doing well after her first surgery.

Throughout Shabbat, Tehilla had a few fluctuations in her blood test results, but is doing well and is stable. Her lungs and breathing are great. Tomorrow, they plan on trying to get her to eat.

Thank you to everyone that has said Tehillim, baked challah and lit Shabbat candles early for her. There is no doubt in my mind that this has all contributed to Tehilla's health. 

Opened Lungs

Tehilla's lung opened! She is breathing nicely and doing well. She is still sedated from the chest tube procedure, but once she wakes up, we are back to pacifier training!

Thank G-d.

Great Update

When I came into Tehilla's room about two hours ago, the doctors and nurses looked very grim. They told me she was unstable, that her blood work showed that her lungs were not doing well and her hemoglobin was low. They had done a chest x-ray and were waiting for the results.

Then Professor Rein, our pediatric cardiologist walked in. I have to say this. Not only is he a brilliant doctor, Harvard trained, the head of the department and highly respected in the international medical community- he is also kind, friendly, patient, and positive. Whenever he sees Tehilla and checks her, he sings a passuk (passage) from Tehillim (Psalms) with the word Tehilla in it. 

Professor Rein walked in, sang a bit to Tehilla, remarked about how beautiful she is and specifically that she has a very nice colour- something very important to note with heart patients. Then he did a heart echocardiogram. 

The first thing he noticed right away was that her left lung was completely collapsed and the left side of her chest was filled with a lot of fluid. Her right lung was open and fine.

He looked at her heart and said that he was very happy. Her heart functionality was very very good. Her heart beat and rate were very good. There is a little leaking in the tricuspid valve, but that is normal after heart surgery and as long as her heart functionality was good (which it is), then it will clear up on its own. 

He went to consult with her other doctors about her lungs. They came in to explain that now they understood why her lung was collapsed. The fluid is built up after surgery and is a normal response of the body. That's what caused her lung to collapse and it's what is causing her blood work to look the way it has. The low hemoglobin is because they have been taking a lot of blood tests because they've been concerned about her lungs. They are giving her blood right now.

They are putting in a chest tube in her left side to drain all the fluid. They expect that her lung will expand afterwards and then she will be able to breath well. They will keep the chest tube there until they are sure all the fluid is gone. And then, they expect that everything should go back and she will be able to continue to progress.

Please continue to pray for her, that Hashem should aid her in her recovery. As well, take the time to go donate blood. Do it in Tehilla's name and you will be helping save more than one person's life.

Slight Improvement

There has been a very slight improvement. Her left lung opened a very little bit. There are also indications from her blood work of an improvement. This means they will not intubate her again, but continue on with physio. This is a very positive sign as it means that her lungs did not collapse from something being anatomically problematic and it's just a matter of time.

Please keep up all the praying, challah baking and everything else.

Something...

They turned Tehilla onto her stomach, to try to get her to breath better.  It seems to be working somewhat. She has started taking some deeper breaths.

It also upset her a lot, which may sound strange, but is great. It got her moving her head around and flailing her arms. The movements help her to open her airways. I put on the Maccabeats version of Brave for her to listen to. Turns out she's a fan, and it relaxed her. So, I had to turn it off.

She also let out some strong cries. All good. So, she still has the collapsed lungs , but we're moving towards progress.

Here's a picture of the physical therapist and a medical clown both "working" on her. I absolutely love medical clowns.

No Improvement

Tehilla has had no improvement. They have increased her oxygen, and given her  a humidifier as well as Tylenol for her pain.

The physical therapist came in and did exercises with her to open her lungs. She taught us some of them to do with her every hour. She still has not improved.

We were also told to bring in toys for her to get her excited and hopefully get her more active.

Thank you to our incredible friends and family that have dropped everything to help us whenever we ask. 

Tehillim (Psalms)

We've been told to ask people to say Tehillim (Psalms) 57, 58, and 75.

Please pray

Tehilla's left lung is collapsed and her right one is partially collapsed. They don't feel that she is being vigarous enough. She isn't moving around enough and she isn't crying. 

They're going to give her some things to help her and start physical therapy soon.

Please get the Tehillim groups going again. 

Lungs

Tehilla's left lung has collapsed and she is having trouble breathing. She will be getting physical therapy soon to help open her lung back up. 

We're holding off on the pacifier for now.

Little Monkeys

Speaking of which, my other two have only seen pictures of the baby, but they deserve a mention on here. They've had their own ups and downs with this situation. Thank G-d, our families have all been working hard to give them the love and affection that they need and help them through this hard time. Mechal is 7 and Tzviel is almost 4.

Sugar sugar

Tehilla has never eaten. Not even before her surgery. She was ventilated on day 2, and since then has been given nutrients introveniously or through a feeding tube. The day before they closed her chest, they gave her a little of my milk through her feeding tube. Because of this, she does not know how to suck.

Dr. Erez came by and he explained that she was doing well and making good progress with her breathing, but the next step was a plan to get her eating. They are giving her nutrients and calcium introveniously. They want me to sit and work with her on learning to suck her pacifier. Once she can do that, they will try to move her to a bottle and then eventually to nurse.

I asked him when I would be allowed to hold her and he said, "Right now."

They set me up in a chair and gave her to me to hold. I cried. I cried for her perfect little face and her special heart. I cried for Dr. Big Nose who had tried to convince us that she would never make it. I cried for the choice we made and the chance at life that we gave her.

Then I tried to get her to take her pacifier. I sang to her, a song I used to sing my other kids when I would feed them. Finally, the nurse came and put some sugar water on the pacifier. Well, that got the little candy junkie sucking! So, thank G-d, we'll keep at it and hopefully make more progress.

There are no strings on me!

No ventilator, no chest tubes, no catheters, no heart wires, no feeding tubes. She is just on a little oxygen. Ignore the redness, it's just from all the tape and bandages,

They have also taken her off certain medications. Right now, they're trying to get this little sleepy head to wake up- So I can hold her and feed her my milk with a bottle. I am without a doubt going to cry. Happy tears. 

They also are waiting to hear her cry. Because she was ventilated, she hasn't been able to make a peep- literally. Now her vocal chords are a little raw, but she's made a few cute little squeaks. 

So, we're both waiting to cry. We deserve it, no? 

Breathing well

Extubating

Last night they started to wean her down from the ventilator. Now they are going to remove the ventilator and put her on a CPAP machine. They are removing most tubes and catheters today. Thank G-d, she seems to be responding well so far.

Sleeping Heart

Today they removed many of Tehilla's tubes and wires from her chest. They decided to wait until tomorrow morning to take her off the ventilator, in part because there was a small incident where she stopped breathing while changing one of her medications. They stabilized her immediately and she is fine.

They consider that she is well over the worst of it. Still, it's a hard fight that she is fighting. Please continue to have her in your tefillot. 

Here, is a picture of her sleeping. The blanket that she is sleeping with is one that was sent to us in our care package from Sisters By Heart (sisters-by-heart.org) They are an organization made up of "Heart Mamas" who have children with HLHS. They provide newly diagnosed families with support and information. They also send out a care package completely free of charge, filled with things that the families will need while their baby is in the NICU and PICU. It has special pacifiers that help babies retain their sucking ability while unable to nurse, bottles, swaddling blankets for the baby, leg warmers, a knit hat, pen and notepad, toys for our other kids, a heart ring for me, deck of cards for Ron, Purell, hand moisturizer, a "hands-off" sign for the stroller, and this blanket.

This blanket was made by another mother of a little boy named Ryan, who had HLHS and unfortunately did not make it. 

4:30am Bonding

It's my 4:30am little treat! Who can go back to sleep when you could be singing and talking to this little face.

Stable :-)

Tehilla is back to being stable, thank G-d. They are talking about taking her off the ventilator tomorrow and if things go well, to start the step down of all the tubes and wires. 

Closed Chest

They just finished closing her chest. Dr. Erez just explained that there are a few indications that it was hard on her and put her a step back a little bit. He believes that in a few hours, she should be back where she was before they closed. I'll be allowed to go see her in a few minutes. Please daven that she stabilizes.

Closing earlier

They are going to be starting earlier and will be closing Tehilla's chest at 9:30am. Please keep her in your tefillot.

Closing tomorrow

Today we spoke with Dr. Erez, Tehilla's surgeon and Professor Rein. Tehilla has been more stable the past day and a half. Her oxygen levels and blood pressure levels have been good and the swelling has gone down a lot. She still has a little more swelling that needs to go down, but the plan is to close her chest tomorrow, around 10:00/11:00am. 

They are also feeding her my milk right now! 

When we came in to see her this evening she was up and alert again. Here she is bonding with Ron!

Baby Blue Eyes

Look who I found awake and looking around this morning!

Getting there

I want to start this post by saying I am astounded by the multitude of people that have read the blog. People all over the globe are reading and organizing Tehillim groups, challah baking and keeping her in their tefillot. She has created an enormous Kiddush Hashem- exactly what she was named. Please keep it up. Please get her name out more. This is completely out of our hands. As a doctor said to us today, this is in the hands of The One up above. It brings us a lot of comfort to hear about these amazing things going on, so please, comment on the blog and tell us about it.

This Shabbat, was Tehilla's first, hopefully of thousands. The doctors explained that this really is the worst defect a baby could have and has a high fatality rate. Sometimes these babies suddenly take a turn for the worst, and there really isn't anything anyone can do about it.

That being said, he said that the general feeling amongst the staff is she is almost over the worst. She still needs a lot of support to keep her stable, but it seems that we are getting there. 

Her swelling has gone down a lot. It does fluctuate a lot, but it really seems like she is making progress. 

Her surgeon came to check on her today and was satisfied with her progress and gave instructions to keep up with the treatments. The hope is that in the next little bit, they will close her chest and start feeding her my milk.

I spent the Shabbat with my mother, singing to her, talking to her, stroking her little feet, hands and head. 

Tehilla, when you are big and strong and we can read through this with a calm smile, your Grandma promised to buy you a pink mechanical car for you to drive around in. 

I will try to take a picture of her soon and post it, so you can all see how much better she is doing.

Graphic Picture

Here is our little heart warrior in her big room of machines. 

And here's her teeny little foot. 

The little things

Tehilla is being cared for by an extensive team of doctors and nurses.

In the hospital, Tehilla is listed as "Bat Shel Shoshana" (Daughter of Shoshana). When I asked one of the nurses, if there was a way to put her name into the system, the nurse told me that it would be difficult and might cause confusion in the system. It's better to just leave it " but don't worry, she'll let everyone know what her name is."

When I just went to check on her, this is what the nurse had done.

It's a sign that says "I'm called Tehilla" with her name written in Hebrew, with hearts all over and on the side is a heart with "Tehilla Hametukah" ( Tehilla the Sweety" written in it.

G-d bless that nurse that did that for me.

Stable

I just got to see little Tehilla. Everything is stable with her. To clarify what is meant by all these words "critical", "stable"...

She had open heart surgery yesterday. Her chest is still open and she is still intubated. She is hooked up to many many machines. They still have not woken her up from surgery. I still have not held her. She is a little doll in a big room full of machines that are keeping her alive. She is in critical condition. 

That being said, she is stable. Her stats are exactly what they expect. She is maintaining levels that they want to see. 

So, all things considered (and it's a lot), she's doing well. 

Post-Norwood

Tehilla is recovering in the PICU. She is on tons of machines and there are a lot of wires and tubes.

All standard for heart surgery: they left her chest open because she is swollen and puffy. They need the fluids to drain before they can close her up. It should be about 2 days. She has a clear sterile plastic over her chest and they've covered it with a blanket. 

The swelling will go down and she will start to look better. This picture really doesn't show the worst of it, which is better for all of you. 

Thank you with all our hearts

I want to thank each and everyone of you for "being there" with us today. While we didn't respond to any of the likes, comments or messages, we appreciated each and every one of them. We felt the support and warmth all around us as we waited for each update from the surgery. Hashem heard all of your tefillot and answered our prayers that this surgery go well. Tehilla has a long road ahead of her, but she is strong and putting up a good fight. Our little heart warrior-princess is doing well in the PICU. 

The next few updates on the blog may have pictures that are too graphic or upsetting for some of you. 

Surgery over!

Surgery is over. She is stable and about to be transferred to the PICU. She is having trouble breathing, but it's to be expected. She will be heavily monitored for the next few hours. Keep up the tefillot as she needs them.

Update

They finished the repair of the heart. They are still in surgery finishing things up.

Stable

Surgery is still ongoing. Everything is stable.

Stable- my new favourite word

The surgery is continuing. Everything is stable.

Update

Everything is stable.

Starting...

We just got the first call. They have finished hooking Tehilla up and have given her the anesthesia. She is now starting surgery.

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Surgery has started

They just took her in at 8:40. Ron went in, until the anesthesia kicked in. 

Now we have about 6 hours. 

Norwood Surgery

Tehilla is having her first surgery, the Norwood, tomorrow morning. She will be taken for surgery around 7/8 am.

It will take them about 2 hours to hook her up to all the different tubes, catheters, wires and everything else. Then they will begin surgery.

The surgery takes about 4 hours. We will be getting hourly updates, which I will post on here. 

This surgery is the most "difficult" to perform of the three open heart surgeries that she will, G-d willing, have. 

Please have her in your thoughts and prayers.

Watermarks?

Why the watermarks?

Unfortunately there are terrible people in this world that use these pictures of sick babies and children to run scams. We've been warned repeatedly to make sure our pictures are watermarked. 

A woman that I have been in touch with just had this happen to pictures of her heart warrior son. 

G'morning baby!

Yesterday was a hard day for me.  After the c-section, I was put in a different maternity ward, due to lack of space. I am not on the same floor as the NICU. The nurse I had, was pretty horrible. She refused to allow me to get out of bed, see the baby, try to pump my milk, eat, or remove my catheter. She also couldn't do a single thing right, and took over an hour to give me any pain killers that I asked for. 

Thankfully, I had a wonderful night nurse, who disagreed with everything the previous nurse had done. So, today, I'm up and about! Unfortunately, I needed a CT scan because they thought I had a collapsed lung. The medication that they administered makes my milk unusable for 24 hours. In the end, my lungs are fine and I just have a strained muscle under my ribs. 

They are trying to find me room in the right ward today. 

I got to see Tehilla this morning, for the first time since the birth. It's incredible the way you can fall so deeply in love in a matter of seconds. She's so sweet and has the cutest little thighs. I am waiting for the doctors to do their rounds soon to get an update.

Last night, she had a lot of trouble breathing and was put on a ventilator. Her oxygen saturation level was pretty low as well. This is either due to her HLHS or because of the medication they gave her to keep the hole between both sides of her heart open.

Here are some pictures:

Tehilla is here!

Tehilla was born this morning at 10:33am. So far she is doing exactly what they want her to do. I'll give a more detailed update once I have more information.