03/29/14

What a week, what a week! Molly had her surgeries on Thursday, the same day she turned 6 months old. The surgeon said she was a challenge. He also said her liver was very large and even hard. Despite all that, he was able to get the liver biopsy and put the g-tube in. And they removed her broviac. All good news. Molly has done fantastic post-surgery. She has not required any pain meds or sedation. We have one tough little cookie on our hands! They have started using the g-tube already. That's how she gets her meds. They also started her on pedialyte yesterday. She threw up a bit this morning. So, they are backing up a little on the volume. Molly's motto is slow and steady wins the race. The doctors like to get to the finish line as soon as they can. Molly lets them know what's up though. 

In other news, they have been weaning her vent settings all the time. She had one of the best blood gases we have seen in quite some time. pH was 7.4 and co2 was 47. So, her vent settings are currently at pressure control of 22 (down from 23), peep of 7 (down from 8), and backup rate of 20 (down from 28). Oxygen is currently at 30% and she is satting at 97. I know some of you don't know what I am talking about. Just know that this is good! She has been "riding the vent" when she is in a deep sleep. This means she lets the vent do all of her breathing. But she is asleep right now and breathing on her own. She is a brave sweet girl, and she is doing awesome.

One more piece of good news. We got preliminary results from the liver biopsy. Basically they are trying to find the reason for her liver dysfunction....be it TPN, CMV, or any genetic issues. The prelim results show that it is TPN induced cholestasis. There is no sign of cirrhosis. This means that the liver damage is reversible. This is GREAT news! Thanks to everyone for all their thoughts and prayers. They are working wonders!

Pictures from the week!

03/26/14

So, Molly never got her broviac removed. Her blood clotting factors were not where they wanted them. But, we did move to the PICU. I think it has been a good move so far. She has seen sooooo many doctors. The plan has changed a little bit in regards to her surgeries. Her liver is very bad. Molly's skin is almost orange, ever her tears are orange. This is because of her liver. We have heard the terms liver failure, liver disease and liver dysfunction. They have started on a couple of different medicines to help her body do what the liver is supposed to be doing. One of those things is to rid the body of toxins. One of those toxins is ammonia. When the liver cannot rid the body of ammonia, one of the side effects is agitation and sleepiness. Molly is exhibiting both of those things. Thankfully one of the meds she is getting rids the body of the ammonia and that level has been coming down. Over the past couple of days she has been more awake and alert. Today though, she was awake for several hours. Tim and I got to play with her. She was tracking things as we moved them In front of her. Her nurse even put her in a bouncy seat. That was the first time ever. We hope to get her out of her bed and into the seat everyday. 

So, the plan is as follows. Tomorrow at 11:15am Molly is going to the OR for her broviac removal, liver biopsy, and g-tube placement. The tracheostomy is on hold until her liver issues can be figured out. The liver biopsy will be able to tell them the cause of her liver dysfunction. Hopefully. I personally think it's a combination of the prolonged use of TPN and the CMV. But what do I know, I'm just her momma. 

We have heard that it could be 3 weeks before her trach. That could of course change. But at least we have some sort of idea.

Lots of pictures! Her move to the PICU, her new room, Molly in her bouncy seat.

Day 176 in the NICU

We got to talk in depth with the 'fellow' that is here this month. It was so great to talk to him. During rounds, they always go through Molly's long list of medical problems, all of them since birth. It's hard to hear sometimes. She has or has had osteopenia (brittle bones), bronchopulmonary dysplasia (chronic lung disease), ROP that has resolved, thrombocytopenia, anemia, liver disease/failure, big open PDA, necrotizing enterocolitis, cholestatis, and some more I know I am forgetting. The fellow whose name is JB thoughtfully sat us down to break it all down for us. He said it all boils down to her liver and her lungs. The liver disease is the cause of her retaining fluid, low platelet count, lethargy, brittle bones, and most of her problems actually. Once her liver starts to heal and regenerate, all of the other things will resolve. Of course we all know about her lungs. While they are not as bad as they can be, they are pretty bad. Time and nutrition are the two things that will heal the liver and lungs. And patience for Mommy and Daddy. 

In other news, they tried to take her broviac out yesterday. Since it has been in for 4 months, it has been engrained into her and hard to remove. The surgeon is going to come by again today to try and remove it bedside and if they can't get it out they will take her to the OR.

I have some prayer requests to all those praying for our sweet baby girl. Please pray that she tolerates her feeds. Please pray that her liver and lungs heal. Please pray for protection for Molly's brain. Please pray they can successfully remove her broviac. Thank you!

The picture attached is of the bruising around Molly's broviac after they unsuccessfully tried to remove it yesterday.

03/20/14

So, Molly has been a pretty busy little baby lately. First off, the CMV and blood cultures have all come back negative. Which is good news. She got a PICC line put in yesterday in her left arm. Since she has had her broviac since November, she has outgrown it. The broviac is the central line in her chest through which IV fluids and her meds are delivered. She will get her broviac surgically removed this afternoon at her bedside. The PICC line is like a regular IV in terms of appearance, but is more long term than a regular IV. 

Molly Is getting an upper GI done right this second. They need to check out her anatomy in preparation for her G-tube. She will get this placed the same time as her trach. In other stomach news, she had an ND (nasoduodenal) tube placed which replaces her NG (nasogastric tube). The NG tube went down her nose into her stomach when she was fed. A couple of days ago she had some episodes of spitting up. The ND reduces this by bypassing her stomach, going straight to the duodenum.

She had another echo a couple of days ago to check on her PDA closure and pressures in her heart. Everything looked good. 

Pulmonology and the ENT team has been asked for consultations to move forward with the trach. Still waiting on those guys.

Molly has still been pretty sleepy for the most part. But, she was awake a couple of days ago, looking around and tracking us. And giving the nurse the stink eye! She has also started to get her immunizations. She has never had any. They will be spacing them out a little though so as not to overwhelm her with them all at once.

There is one other big piece of news. Since Molly is a bigger baby and they may need her bed in the NICU for another itty bitty baby, we may be moved to the PICU. This will probably take place whenever a bed in the PICU becomes available. The NICU is the neonatal intensive care unit. The PICU is the pediatric intensive care unit. They told us that the rooms are private and more family friendly. I think this will be a pretty quick move once that bed becomes available. Will keep you posted.....

03/16/14

Finally Molly is getting back to her normal self. Not completely, but she is getting there. She isn't sleeping all day and night any more. They have been able to wean her vent settings just about everyday. She only has one blood gas a day, which is really weird to us. Good for Molly though because that means less heel sticks. They haven't been able to run the blood tests on her liver because they require a lot of blood. In rounds this morning they even decided to not pursue those tests. They will check her ammonia level though. High ammonia levels in the liver can make a baby lethargic. Tomorrow she will get that test, a CBC, and another chest xray. Molly has lost a lot of the fluid she had retained, she is now 11 pounds 7 oz. Still puffy, but much better.

Blood cultures have still been negative and no result yet on the CMV. It turned out that they have to send that test out and it can take up to 2 weeks to get the results. Today we learned that the infectious disease doctor believes that the CMV has flared up. That was our suspicion....either that or just your run of the mill cold. Either way, she seems to be slowly getting better.

Yesterday we asked the attending what is the exact plan going forward. Everything hinges on her getting to full feeds. They want to make sure she can tolerate them. Full feeds is 100mL/per kilo/day. Right now she is at 80. The sooner she is on full feeds, the sooner her liver can heal itself. Her vent settings also need to come down a bit. After these two things happen, she will probably be getting her trach. The doctor said it may take a week to get to full feeds. Although at the rate they are increasing now, I think it will be sooner. So, we wait. And hope and pray that she tolerates her feeds.

03/13/14

Since Molly's PDA closure, not much has changed in the respiratory department. We have other developments though. One interesting fact we found out is that her PDA was as large as her aorta. That's a substantial PDA. According to one of the doctors, a PDA this size could not have been one that closed and reopened. So, logic would dictate that her PDA has been open for the past 5.5 months.

Anyway, about these new developments. Since Molly got to children's, she has not been the same. She is very lethargic and she has swelled up. She has gained 2.5 pounds in fluid alone. Not only that, her liver and spleen are very enlarged. I asked the attending doctor how concerned he was about her liver. His answer was "very concerned". So, it doesn't look like we will just be at children's for her to be evaluated for a trach and g-tube unfortunately. She has many other things that they are concerned about. She has brittle bones and the liver and spleen enlargements. These could be attributed to her prolonged use of TPN (IV nutrition). Also, her abdomen is distended so she is off feeds. The plan right now is to check out her liver more in depth. They are going to run a whole slew of tests on her liver. They sent out blood cultures for any infection. And, they are checking to see if her CMV has flared up. If so, this could be the cause of her liver acting up as well. Tim and I think she for sure has an infection. This is how Molly usually reacts when she does...lethargic and fluid retention. It's tough to see her go from our Molly, eyes wide open looking around. Right now, she never opens her eyes and can barely tolerate being touched. It makes Momma very sad and extremely worried.

In other news, they believe that Molly was suffering from fentanyl withdrawals. So, she is now on methadone.

Day 163, 03/09/2014

This is going to be a long post, so please bear with me. You are about to get a lesson in health and science.  This first part is a direct quote from http://www.stanfordchildrens.org/en/topic/default?id=patent-ductus-arteriosus-pda-90-P01811.

“What is PDA?
PDA is a heart problem that is frequently noted in the first few weeks or months after birth. It is characterized by the persistence of a normal fetal connection between the aorta and the pulmonary artery which allows oxygen-rich (red) blood that should go to the body to recirculate through the lungs.
All babies are born with this connection between the aorta and the pulmonary artery. While your baby was developing in the uterus, it was not necessary for blood to circulate through the lungs because oxygen was provided through the placenta. During pregnancy, a connection was necessary to allow oxygen-rich (red) blood to bypass your baby's lungs and proceed into the body. This normal connection that all babies have is called a ductus arteriosus.
At birth, the placenta is removed when the umbilical cord is cut. Your baby's lungs must now provide oxygen to his or her body. As your baby takes the first breath, the blood vessels in the lungs open up, and blood begins to flow through them to pick up oxygen. At this point, the ductus arteriosus is not needed to bypass the lungs. Under normal circumstances, within the first few days after birth, the ductus arteriosus closes and blood no longer passes through it.

What causes PDA?
A PDA is almost always present at birth. In some children, the PDA does not close. Although exact reasons why this happens in some patients and not in others are not known, the most common association for a PDA is prematurity.
PDA can also occur in combination with other heart defects.

Why is PDA a concern?
When the ductus arteriosus stays open, oxygen-rich (red) blood passes from the aorta to the pulmonary artery, mixing with the oxygen-poor (blue) blood already flowing to the lungs. The blood vessels in the lungs have to handle a larger amount of blood than normal. How well the lung vessels are able to adapt to the extra blood flow depends on how big the PDA is and how much blood is able to pass through it from the aorta.
Extra blood causes higher pressure in the blood vessels in the lungs. The larger the volume of blood that goes to the lungs at high pressure, the more the lungs have to cope with this extra blood at high pressure.
Children may have difficulty breathing because of this extra blood flow to the lungs at high pressure. They may remain on the ventilator for a longer period of time if they are premature. The support from the ventilator also may be high, due to this extra blood flow to the lungs.
Rarely, untreated PDA may lead to long-term lung damage. This is uncommon, however, since most children will have been treated for their PDA before the lungs get damaged.
Often, the PDA may be "silent," that is, causing no symptoms. This is especially true in older patients (beyond the first few months of life) with small PDAs.”

End of health lesson.

Molly has so far been seen by an endocrinologist (thyroid), pulmonologist (lungs), and a cardiologist (heart). The most interesting visits of these has been from the cardiologist.  They did an EKG and an echo of heart. Now, you may or may not remember that during Molly’s stay at Hunt Regional in Greenville, she had a PDA. It naturally closed on its own after awhile. The cardiologist at Children’s discovered that the PDA reopened. Reopening can be caused by stress or infection.  Molly has of course experienced both of these. The neonatologist seemed to express that the PDA is not small, so its size must be significant. This could potentially be the reason that Molly has had so much trouble getting off the ventilator. So, before they jump into giving Molly a trach, they want to close the PDA. Monday, she is slated for a procedure called a cardiac catheterization. They will go through an artery in her groin, thread a catheter up into her heart, and simply plug up the PDA. They are going to see how this affects her respiratory situation. They will gauge this based on blood gases and chest x-rays. This could potentially be all she needs to successfully be extubated. I am not sure what time the procedure will be done tomorrow.  I have a sinus infection and have not been able to see my baby girl in 3 days. I am starting on antibiotics today, but I don’t know if they will let me in to see her.  Not even while wearing a mask. Their philosophy is this....if you need to wear a mask, then you must be sick, so you need to stay away from the NICU. I get that, but I want to see my baby before this happens! Tim will ask today during rounds.  We are back to attending rounds every day. It takes them about 2.5 hours to get through all the babies in Molly’s area anyway.

More about Children’s:  So far, we have liked everyone taking care of her.  There is a team of people for everything.  Even a “picc team” that comes to change the dressing on her broviac. The feeling of the NICU is much more clinical and Molly is more of a patient than a little baby. The physical therapist was surprised that we held Molly at Plano and that she sat up in a bumbo seat. I guess they think that she has laid in a bed for the last 5.5 months.  My hope is that we won’t be there that long. Whatever Molly needs can hopefully be done quickly and we can move forward on our path to going home.

I have some special prayer requests. Please pray that I get over my sinus infection quickly. Please pray that Molly stays infection-free. Please pray that the heart cath tomorrow is a success and that she is not in any pain and that the PDA can successfully be closed.  Please pray that this is the answer to her being successfully extubated and that she won’t need the trach after all.  What a blessing this will be!  I will try to keep everyone more updated. I have felt like pooh since our transfer.

By the way, Molly is still weighing 10.5 pounds. She is off her fentanyl. Still on breast milk, continuous feeds of 19mL/hr, fortified to 24 cals with neocate. They had to give her some ativan yesterday (sedative). I am sure she could have been soothed by being given some love and being held. But, that was not the case.  The nurses and RTs are so very afraid that Molly will pull that breathing tube out, that they keep her arms wrapped up tight. And, they are transitioning to neobars (the bar that holds the tube in place by being glued/taped to her face) from the medical tape.  However, they haven’t made the transition just yet. So, Molly has tape on half of her face to hold the ET tube in place. I. Hate. That. Tape! I am sure Molly does too. Like I said, hopefully we won’t be here that long!!!

Trachs, Children's, and Transfers, oh my...

So, I was trapped at nicole's house until yesterday due to the crazy weather. Lots happened at the hospital while I was gone. Pretty much everyone is in agreement that Molly will need a trach. She could either stay in the hospital,waiting on her lungs to get stronger and for extubation. That could take weeks to months. Our alternative is to trach her and get her home within 2 months give or take. So, here is the plan. We ate currently waiting on a bed to open up at children's hospital. At this time I am not sure if she will be in the NICU or PICU (pediatric intensive care unit). At any rate, once a bed opens up, they will transfer her there. The doctors there will evaluate her for a week or two. Then we will do the surgery. Probably at the same time, they will put in the g-tube. Since Molly hasn't eaten anything by mouth ever, this will be how she takes in all of her nutrition. We will eventually work with therapists who will teach her how to eat by mouth. Anyway, it will take about a week for her to recover from surgery. All the while she will be paralyzed. This will allow her time to heal while not trying to yank the ventilator and trach out. Then we will move to the pulmonology (lung) floor for about another week. Then, Molly will be transferred to Our Children's House at Baylor. Tim and I will learn how to take care of her. We may be there for a month or so. Then, home. We will have to have in home nursing 16 hours a day. I worry about the quality of care we will get in SS.  But, we will cross that bridge when we come to it. She will most likely be on a home ventilator that we will eventually wean her off of over the next year. Then if all goes well, she will get the trach out (decannulated) after two years. This all sounds scary, and believe me, we are scared. But, it is what she needs to breathe and to get her home. She will have less risk of infection being home, plus she can start meeting developmental milestones. Tim and I will be staying at the Ronald McDonald house close to childrens. Assuming they have room.
In the meantime, Molly is doing awesome. She is taking all nutrition through breast milk. No more TPN! This is huge. Hopefully her liver will start working better and all the damage from the TPN will start reversing. She is our awake and curious little peanut once again. Her fentanyl has been weaned down to .5. She may not have to go on methadone to combat the withdrawals from the fentanyl. Methadone sounds terrible doesn't it? She seems to be doing much better on the lower dose of fentanyl, so maybe we dodged the methadone bullet. Other than that, not much to report. Will keep everyone posted about the transfer situation.

Reintubated

I left the hospital yesterday to go see Nicole and company. I left Molly in the good hands of her daddy. As the day went on, Molly started trying harder and harder to breathe. Around 6:00 last night she had to be reintubated. Dr. Jain was there. He told Tim that we are one step closer to a trach but he wants to give her one more shot on Cpap. I don't know when or details yet. I am heading back to Plano sometime today and I suppose we will talk more in depth with Dr. Lucena or Jain today. Please keep us all in your prayers. Thanks.

March 1

Molly is still on Cpap! Overnight her CO2 started to creep up. At 6am it was really high at 88. They made some setting adjustments, did another gas at 8:30, and co2 was 64! So, she is hanging in there. Dr. Lucena is going to extend her steroid course to give her the greatest chance of staying on Cpap. She won't get another gas until 8pm unless she is showing signs that she is working harder to breathe.
In other news, Molly's platelet level has nearly doubled over the past few days and her white blood count is perfect. Her liver enzymes are up and her liver is enlarged. But that should get better once she receives all of her nutrition from breast milk.
Thank you to everyone for the prayers. Please continue to pray for Molly and that she has a great day! Thank you!