Longest day of our lives

The neurosurgeons were able to pull off a small amount of blood with the tube they placed. Soon after the flow stopped and they said that there was still a large amount of liquid and clot left. After some issues on a CT scan location (they had to bring someone back in to open the scan thats on the same floor - usually only open during the day) they confirmed this. They said the next and only option besides leaving the clot, and any brain damage in place, was to operate and remove the clot. At this point moving the tube was not an option because the portion that was clot could not be removed with the tube. Lalo went to the operating room at 11:45. The operation took about two hours. They where successful in removing the clot and he was stable after the surgery. No one should have to go through this ordeal let alone approve and then just sit and wait. The doctors have been very reassuring that a baby such as Lalo has the ability to rebound from this type of trauma, but there are many unknowns and if he can survive the CDH surgery next we will not know the affects of this surgery for many years. Please pray for him to have the strength and ability to rebound from this.

The neurosurgeon just stopped by to look at him and was happy that both of his pupils reacted to light (one was not responding before surgery) and that he was responsive to touch. Sarah just helped the nurse to give him his first bath and he was also responsive to that. They will take him for another CT scan later in the day. One of things they are concerned with after the relief of pressure on his brain is swelling. Swelling is the natural reaction, but too much will just put us right back through hell.

Lalo

Wednesday, September 30

Sarah's sister Ellen...
Routine scanning done overnight showed bleeding between the skull and the brain. This is pressing on and crowding the brain. The doctors need to place a drain to relieve the swelling. To do this, Lalo needed to be separated from his "conjoined twin" (i.e., come off ECMO) and be taken off heparin (blood thinner) so he doesn't bleed too much from this procedure.

He seems to be doing a good job of "holding his own" off ECMO. He's on a respirator, but doing some of the work himself. His kidneys are also giving a good effort, with a little help from medication. Right now he doesn't need medication to keep his blood pressure up and his labs are good.

They did a CAT scan after he was taken off ECMO. This confirmed a large pool of blood and some darkened areas indicating injury. There is no way to know the ultimate impact of this. The newborn brain is in the best shape of any to adapt to any injuries, but a few prayers wouldn't go to waste here.

The effects of the blood thinner have decreased enough to place the drain, which should be done shortly.

We'll update when we have more info.

Sent from my iPhone

9/28

> Lalo had some improvements over night. He has been peeing some on his own and the heavy antibiotics seem to be helping. He is still extremely swollen from several days of his kidneys not really responding. But he is way less pink than he was yesterday and his hands and feet are a much better color/temperature (yesterday they were gray and ice cold).
>
> They have had to increase the settings on the ecmo to help him fight off the suspected infection as well as the extra stress that the fluid puts on his lungs.
>
> The fellow showed a lot less stress in her face when she gave me some info after rounds. She is happy his kidneys are starting to pick up and overall seemed like he was showing some progress. But she didn't want to say any of that around little Lalo bc he likes to try to keep her on her toes. Sounds like our boy! The surgeon also was very cautious and said we need to just hope and pray that he has a couple more good days like this. We are still not confident, but today is a better day than yesterday and we'll take that. Please continue to pray that Little Lo can stack up a few more good days.
>
> Sent from my iPhone

A new week

>> More of the same roller coaster ride over the last 2 days. Unfortunately, just when we think we are making progress, we fall back behind or encounter a new issue. Lalo's kidneys continue to be a big issue for him. The drs seem to alternate approaches every couple of hours, but at the moment they have turned off the ultra filtrate (the kidney on the ecmo machine), turned off the the dialysis (did we ever mention that they started that over the weekend), and continue him on a medication to encourage his kidneys (basically like caffeine for you or me). So far not doing the trick but we are still hoping that this starts working.
>>
>> Our new issue is that they believe Lalo has an infection. Yesterday he got really red, his heart rate increased, and the ecmo machine gave some other indications that he may have one. He initially responded very well when they started him on antibiotics, but then continued to show symptoms. They are working on adding several antibiotics to help fight whatever is causing this. So far none of his cultures have come back positive, but they often take 48 hrs, so they treat it regardless. Unfortunately, these antibiotics are also not kidney friendly so it just makes the hurdle more significant.
>>
>> One positive note is that the attending this morning was pleased with his lungs while looking at his X-rays. We just really need to get over these battles, pray for our little man to have some added strength to fight these issues.
>>
>> Sent from my iPhone

New ecmo machine #2

So after having dinner with Caleb, playing, and putting him to bed, we called the hospital to check in on how things had gone since we left at 6:30. Much to our surprise, they told us they had made the decision to replace the ecmo circuit again. I guess they became worried because of some clots in the machine and the fact that they still weren't getting any urine output for the day. This blindsided us a bit since last time there was at least some discussions we were aware of in the hours leading up to the switch. After waiting an hour to call back (we didn't go back since they kick you out anyways so they can create a sterile field) we finally breathed a bit. They said the switch went great and his levels all stayed good throughout the change and they even got some pee!! (here's to hoping that one day Little Lo can be super embarrassed about how much info I put about him peeing on the Internet).

Another issue we came across today was that there was some blood leaking from the cannulas in his neck. Any extra bleeding is worrisome bc one of the biggest risks about being on ecmo is that you are on blood thinners to help prevent clotting. This can cause serious bleeding issues. When we called back though the nurse had gotten through to the pediatric surgery dept and they decided they weren't concerned. Let's hope this remains the case.

Sarah & Lalo

Cutie pie

Sat 9/25

No major updates for today. Our surgeon told us yesterday that any day that something bad doesn't happen is a very good day. We know that in our minds but our hearts wish for more progress. This is day 8 on ecmo and from rounds this morning, it sounds like there are no plans to try to come off in the next 48 hrs.

As you pray for Lalo, please include the 3 other babies at the hospital that are on ecmo. One of the techs the other nite told me that this is only the 2nd time ever that all 4 ecmo machines have been in use at the same time. They actually have 5, but for a safety measure they always keep one as a backup. Scary to think about what happens if another baby needs it. I know what's now at the top of my list for what to do after we win the lottery.

Thank you everyone for all of your prayers, love, support and help. We feel incredibly fortunate to have so many wonderful people in our lives. Not to mention, incredibly lucky to have such great doctors and nurses.

Keep praying for little Lalo's kidneys, they seem to be what's holding us back at this point.

Sarah & Lalo

Lalo's got the best view in the hospital

Update

Another subpar day. They did another clamp trial today and it didn't go as well as the last one. He was only off for 25 min before they decided he needed to go back on. His blood gas levels showed that he was not doing well being off. The way the nurse explained it to us is that this really just indicates that he needs the extra help from the ecmo machine. Most likely this is caused by the extra fluids (still having issues with the kidneys), since there is also probably fluid in the lungs which affects how they function.

So they have decided to give him the weekend to rest and give the kidneys more time to recover. Since they won't be doing any tests, we are thinking surgery won't be in the next few days. We also talked to our surgeon this morning. He was overall optimistic, but feels very strongly that the kidneys need time to heal and that he needs to be on ecmo right now. We also have discussed some of the details of surgery. Unfortunately he can't really tell the extent of the defect until the surgery. If the missing portion of diaphragm is smaller, he is able to do a way more minimally invasive surgery. We hope this is the case.

On a positive note Lalo brought Caleb up to bmore this morning (I stayed here last night). We are thrilled to have both of our boys in the same town and get to see both of them each day until Sunday - we had been alternating the rest of the week. Lalo goes back to work on Monday (assuming no surgery) so we will have to figure out our new routine. Pray for a boring weekend for our little man, a small hole in his diaphragm, and that his kidneys kick into high gear.

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Thurs update

> So unfortunately we didn't make much progress today. They wanted to let him rest today so early on they decided not to do a clamp test. We started out pretty optimistic bc he was peeing like a champ last night. But I guess they are still not happy with how much fluid he is getting out. His blood pressure and oxygenation needs were also too sensitive today and getting too high, so they don't want to crank up his artificial kidney on the machine very much. So basically what they need to do to get him into surgery, they can't make it happen very quickly. Looking like a few more days on ecmo and hoping for surgery early next week. Baby steps...
>
> Sent from my iPhone

L's conjoined twin ;)

One of the scoreboards we watch daily

Clamp test take two

Clamp test # 2 went okay, not stellar, but okay.  This is according to dr. guru.  So we will go at it again tomorrow.  He was off for 45 min (last time was 28 min).  They did an echo of his heart at the same time and that seemed to be functioning as expected (not the same as normal but good for what's going on).  The fellow on Lalo's case at the moment calls him a party-er bc he likes to move around so much.  She said that's pretty much ok when he's off ecmo but not so much for when he's on, so they have to keep him pretty sedated.  Only other bump is that his kidneys aren't working so hot today but that could be caused by several things, so hopefully those can kick back into gear soon. The goal is to get some more fluids off oh him before they try again tomorrow. 

We also followed up with the surgeon.  He was very positive about how Lalo is  doing so far.  But ideally he wants to see the kidneys in better shape before he takes him into surgery.  For the operation they will need to pump him full of fluids and he needs to be able to get rid of them himself, without the help of the ecmo machine.  So if his kidneys are able to get a little better function tonight we can than move on to planning surgery.  Perhaps it could be as soon as Fri or Sat.

Sarah & Lalo

One week

Happy 1 week birthday little man! It feels like a day or a year depending on the moment. It is also day 6 of ecmo and hopefully we can soon put that part behind us.

We were here in time to sit in on rounds this morning. Today is also the day the new attending takes over. From what everyone tells us he is the ecmo guru and he was also the one who was here thurs night to make the decision to put L on ecmo. His decision was to do another clamp trial shortly with more of a chance of coming off for good tomorrow. Our surgeon likes to keep the cannulas in his neck for surgery and the attending said there is only a 24 hr window they would want to do that. So sounds like things would move quickly once they make the decision. Pray our little man does great with this today.

We are watching the clamp trial as we type. It is like sitting front row for the most intense game of the year. Go L!!!

Sent from my iPhone

ECMO machine

Room decor

New ECMO

>>
>> We have been put in a holding pattern. On arrival today we found out that the ECMO machine has been forming clots in various parts and will need to be switched out. Lalo has had hypertension as a result and has been put on various meds to help with this. He is still responding well but will not receive a second clamp test today as we hoped. He will essentially receive a clamp test during the switch but we will not get the info and be able to move forward to being taken off ECMO until the next clamp test.
>>
> The goals for today are to switch the entire system out, keep taking fluids off to prep him for a second clamp test, and switch his ventilator to something that will be a better fit for when he comes off ecmo.
>
> We're hoping that tomorrow brings more progress.
>
>> Lalo and Sarah

Good work little Lo

We were able to get some quality sleep last night after calling the nurse to get a report on his night. She told us he had a great couple of hours, they were getting some fluids off and the drs were starting talks of doing clamp trials (more info below). Called again this morning to get another rundown as we started our commute to bmore and more of the same. Only updates were that he was burning thru less platelets - this has been an issue over the last few days - and they had to give him some more sedatives bc he was opening his eyes and getting more excited.

Lalo definitely looks less swollen today and all of his numbers seemed very stable. We got to witness for ourselves him opening his eyes (well really just the right one, still too much fluid on the other side based on how his head lies). But it is absolutely wonderful to finally see his eyes, which so far look very steel gray like his big brother's!

We also got it to sit in on rounds and to visit with our surgeon. Overall, very good report card for little Lalo. They want to do a clamp trial today based on how he has been responding to ecmo so far. Basically what this mean is that they clamp off the blood flow in and out of the ecmo unit, and let him try doing the work. It is just testing to see how well he would do if they were to take him off of ecmo. No guarantees, but definitely step in the right direction. Hopefully, that should be done this afternoon so please say a little prayer that it goes well.

It was good to get regrouped at home last night and Caleb was happy to see Basco - even gave her a big hug :)

Sent from my iPhone

ECMO

Lalo was put on ECMO Thursday night. This is Basically a heart and lung bypass. The doctors felt that he was not progressing the way they would like and ECMO will allow his heart and lungs to rest and prepare him for surgery. It will also help stabilize him, we were told that this is like hooking him back up to the umbilical cord. He was moved from the NICU to the PICU for this procedure. Besides all the tubes in previous pictures he now has two large tubes that are removing and supplying blood to his body in his neck. We have not been able to make ourselves take any pictures since this has started. It is extremely hard to see our little guy like this.

Since the start of ECMO he has been much more stable, but has been holding more fluid. The doctors felt that they should add an artificial kidney into the system. Not that his are not working properly, just due to the fact that they are giving him lots of fluid and his little body can't keep up. He is extremely swollen because of this. They have had three kidneys clot up and are working on the fourth. Again not a bad thing just an issue they have with adding a kidney system that is not specifically made for the ECMO system. Pray that #4 lasts longer than the others.

Since the ECMO treatment has started he has shown signs of improvement. They have been able take him off a few support systems he was on such as nitric oxide and an oscillating (sp?) ventilator. He has been showing some signs that he does not need to be on ECMO. They said there's a chance they may try and ween him off earlier then the expected 10-18 days babies in his condition usually are on the ECMO treatment.

This is just a small portion of info from a very stressful few days. We will try to update every few days or so to give everyone a general idea of how little Lalo is doing. Thank you for all your kinds notes and emails, please know we are getting them, just don't have the minutes to reply right now.

The ECMO team member told us today that the best way to have family and friends help is to have them donate blood. These ECMO babies need lots of transfusions, Lalo has already had many. While you can't donate directly to him, it definitely helps the general cause.

Sarah & Lalo

Day 2

We got to spend a lot of time with Lalo this morning. We found out his birth weight was 7 lbs 8 oz and about 20 inches (they had it wrong but didn't want to move him to get an exact measurement). He had an echo of his heart this morning and we haven't gotten the official results yet but it seems like it went pretty well. They have been adjusting meds to regulate his blood pressure. Right now they seem pretty stable but not always as high as they want them. As we expected we can't hold him bc of all the cords and tubes and such. They also don't want us to touch him very much bc it could affect his pressure and they want to save the stimulation for any medical procedures.

To add to the chaos there was a shooting here this morning. Luckily we were in the nicu at the time so we were locked in with baby instead of Sarah's hospital room. A little while ago they relaxed the restrictions a bit so we were able to get back to our room and get something to eat. Fina is with us now - luckily she was in surgery this morning bc the shooting was on her floor.

Thank you for all the well wishes!

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Close up

Sarah and Lalo

The 30 seconds we got to see him in his first 5 hrs of being here.

Lots of tubes

Lalo & Lalo

Lalo John Baca-Asher was born at 5:31pm. We are waiting to get word from nicu about weight and other stats. Ped surgeon just visited us. The baby is sedated and on a ventilator, but is stable. It will be probably awhile before we have any real info. He was absolutely adorable and hopefully we should get to see him in the next hour or so.

Date Set

We are scheduled for induction next Wednesday, September 15th! Hopefully the baby wants to keep with our scheduling :-) So we are officially less than a week out. Please pray, wish & send good vibes to our baby. We know we have challenges ahead of us, but we are looking forward to meeting him & figuring out his situation.

I make no promises on how frequently we will update the blog - we are your typical procrastinators. But we hope to post the big things & at least a few pictures so check back to get the latest.

Love,
Sarah & Lalo

Diagnosed with CDH

Info on our situation from the email I sent out over the summer...Some of you may have already heard, but we wanted to officialy share some news regarding Baby Baca-Asher (due 9/21/10). The baby has been diagnosed with a right-sided CDH (Congenital Diaphragmatic Hernia). We have been under the care of a maternal-fetal specialist for several months, as it was visible fairly early that something was causing the baby's heart to shift out of place. It was originally thought to be a CCAM (Congenital Cystic Adenomatoid Malformation), which is a non-cancerous mass in the lungs. This was fairly easily treatable with surgery at some point in the first year. However, when we went to Children's Hospital to have an MRI July 13th, we were shocked to learn of the new diagnosis. This diagnosis brings a lot of uncertainty with it, but at this point we do know it will definitely require surgery & a stay in the NICU. We will be delivering at Johns Hopkins Hospital, which my doctors' have referred me to as having the best pediatric surgeons & the best NICU equipped to handle a baby with this issue. An added benefit to this is that I will be able to deliver at the same hospital that the baby is being treated at. Please keep baby B-A in your thoughts & prayers.