Clothes and CPAP

Eli has done well so far this week. The doctors have been continually weening him off of the ventilator. He also is eating a lot more - he is up to 24 mL of milk! Before heart surgery, he was only getting 6 mL so he has definitely come a long way. He will be 32 weeks old on Monday. The time is really going by quickly.

Eli is also big enough to wear clothes. Today he finally hit the 4 pound mark! He's one of the bigger babies in the pod.

Thanks for the hat, Stephanie! 

On Wednesday, the doctors decided that he was ready to try CPAP. I got to the hospital about 20 minutes after he was put on it. He looked so uncomfortable.

Eli could not calm down enough for consistent breaths. He was breathing oxygen at 70% and wasn't tolerating it well. He would throw his hands up and grab the tubes on top of his head and try to pull them off. I stayed with him for the next couple hours and tried to calm him down by giving firm touch. Premature babies feel more comfortable when they are given boundaries because it reminds them of being in the womb. Even with the constant pressure of my hands on his body, he still was fighting hard to grab those tubes on his head. 

After being on CPAP for three hours, the nurse did a blood gas. His CO2 was really, really high so the doctor wanted him to be reintubated. A little bit later, the respiratory therapist and doctor came to place the tube back in. At this point, Eli's breathing was very labored. He had stopped fighting and I could tell he was tired of working so hard on his own to breathe. 

Eli was much more relaxed with the additional support of the breathing tube. As much as we wanted him to stay on CPAP, it was clear that he wasn't quite ready. Regardless, the doctors were surprised at how quickly they were able to ween down his ventilator settings after his heart surgery. Most babies aren't ready for CPAP until two weeks after surgery and Eli was ready after six days. With the breathing tube back in, the weening process begins again although the doctors are taking it slower so Eli will be more prepared start CPAP again. Even though he was only on CPAP for 3 hours, his next X-Ray showed lung improvement. Slowly but surely he is making progress and we are grateful for every small step.

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Surgery #2

While I held Eli on Wednesday, I got my daily update from the doctor. He seemed concerned that Eli's ventilator stats were continually trending upward. Eli was receiving breathing treatments to help open his lungs for better gas exchange but these treatments were not having much of an effect—Eli's blood gases still contained large amounts of carbon dioxide. The doctor wanted to do another echocardiogram the next day to check on the size of Eli's PDA. Since Eli's PDA had reopened, surgery to close it was inevitable; it was just a matter of when. I was sad that we would be going through another surgery when it seems like Eli just had one. But at least we had more time to prepare ourselves since this was not an emergency like last time. Not five minutes after the doctor stepped out, he came back after re-reviewing Eli's past echocardiograms. He changed his mind and said another test wasn't necessary because the last two reports had shown a significant increase in size. He would call the surgeon today let me know when surgery was scheduled. A few minutes later, the surgeons office called Eli's nurse and told her surgery would be the next day at 10 am. The doctor also decided to have the broviac central line put in on Eli since the surgeon would already be here and he wasn't sure how much longer the picc line was going to last. We have learned the NICU team works very quickly and changes happen almost instantly.

As I looked down at the sleeping boy in my arms, I felt so sorry he had no idea what he would go through in the next 24 hours. I said a prayer and snuggled with Eli for the next hour knowing it would be several days before we could do this again. The nurse said Jason could come hold him that night. 

He was so cute and alert as Jason held him. Since Eli is over 1500 grams he can be held swaddled now. 

The next morning we arrived at the hospital at 9 to spend some time with Eli before surgery and meet with the surgeon and anesthesiologist. We felt very calm and assured the whole time and had confidence in the doctors and their decisions. I started feeling nervous once the surgeon started to explain all of the risks, but I knew they had to tell me everything that could possibly happen. They make an incision on the left side and have to open up the ribcage. Then they collapse the left lung so they can have access to the vessel and stitch it closed. The PDA is located next to major blood vessels, the heart and also a nerve that controls the vocal chords. The surgery is common for premature babies and our surgeon said he has never had any complications so that made me feel a little better. Once again we waited and waited. My sister called me to help pass the time. After just over an hour, the surgeon came in to talk to us. The surgery was successful and Eli did remarkably well! Such a big sigh of relief!! So happy that our little man made it through another bump in the road. 

Eli still has a lot of pain medication so he has been pretty quiet, but he is already breathing better after surgery. They've been able to turn down the percent oxygen he breathes and the rate the ventilator gives him breaths. They have also started feeding him already and he has been tolerating that well. 

Once again we are so grateful for your continued thoughts and prayers and the wonderful NICU staff!

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Admittance

I thought I would go back to the beginning and write about how it all started. The night before I was admitted to the hospital, Tuesday, December 17th, I had a wonderful baby shower! (thank you flower mound ladies!) Little man must have been too excited from seeing all of the cute clothes he was going to wear!

Last preggo picture

The next morning I woke up feeling wet - not sure if I wet myself or if there was something else going on, but I was a little worried. I called my mom wondering what I should do and she said go to the doctor, and that it never hurts to get yourself checked out! I called my doc and they told me to come in whenever I could—Jason was at work, but luckily they were super flexible and let him leave so he could come with me to the doctor. As we left the house, there was a thought in my mind that I might not be back for a while, but I put that thought aside because I was pretty sure nothing was wrong. Jason and Cliff came home and gave me a blessing, then we were off to the hospital.

We had to wait a half hour or so to see the doctor. She did an ultrasound and said there was plenty of amniotic fluid and the baby looked good—sigh of relief! She said she wanted to look at my cervix just to make sure everything was ok down there. Right after she examined me, I noticed a worried look on her face. She told me I was dilated to a 2 and the amniotic sac was bulging out of my cervix! I have what is called an incompetent cervix. The weight of the baby was too much for my cervix to handle and so I started to become dilated. My doctor said I would be put on bed rest immediately and it was a good things I decided to come in. Ok, I thought to myself, I can do bed rest. Then she told me I would be on bed rest at the hospital. Until the baby was born... I cried. Not the news you want to hear a week before Christmas. This was going to change our plans big time. We were supposed to drive to Utah in two weeks to go back to school. We had a lot of decisions to make. My doctor (who is so sweet by the way, if you live in Plano and need an OBGYN, Christina Woods is amazing!) walked me up to Labor and Delivery to get me admitted for preterm labor.

A lot happened over the next few hours—I really wished I had gone to the bathroom before being officially put on bed rest! Using a bed pan is no bueno. After getting me situated with IV's, monitoring contractions and the baby, and doing a bunch of tests, a NICU doctor and nurse came in to speak with us. The whole time I was thinking, wow this is really early to be talking about us having a premature baby, I just got admitted! This isn't going to happen to us, I'm going to stay pregnant for a while. The neonatologist told us survival rates and all the major medical risks, defects and concerns of having a premature baby. I think we were all a little overwhelmed by all the information we heard that day. I also can't remember much of what he said because I was only half paying attention. I honestly did not think I would be going into "real" labor anytime soon or that I would have a premature baby.

The monitors strapped to me showed that I was having light contractions, but not anything that I could feel. Dr. Woods started me on a Magnesium Sulfate drip to slow down my contractions. I was also given two steroid shots to help the baby start producing surfactant, a fluid that coats the lungs. The magnesium made me feel pretty crummy. Every time I turned my head I had double vision and felt really dizzy. My skin felt really hot and flushed and my throat was constantly dry. My limbs felt heavy and immovable—a nurse turned me every few hours since I couldn't really move on my own. I was on magnesium for 24 hours. I didn't sleep much that night, my nurse would come and check in on me every hour and someone from laboratory would draw my blood every 4 hours. I remember looking over at Jason sleeping on the couch and wishing I could fall asleep too. It was a long night.

Contraction monitor

The next day I had another ultrasound to check on the baby. My fluid still looked great and baby did too. Also, Dr. Woods said it looked like the bag was no longer bulging through my cervix (great!), but I was still dilated to a 2 and at risk to have it bulge again. At this point, it had been 24 hours since I started Mag, so the nurses stopped the drip, took off the monitors and removed the catheter. I felt so free! I had been staying in a room in labor and delivery during this time so I could be closely monitored. Dr. Woods decided to move me to the antepartum ward, which is for pregnant women on hospital bed rest like me. I also was given bathroom privileges, which I was so excited about! You never appreciate going to the bathroom on your own more than after having a catheter and using a bed pan...

My stay for the next 5 days was pretty uneventful. The baby's heart rate and my contractions were monitored twice a day for an hour. I typically had 1-2 contractions during that hour. Sometimes I could feel them, but it was just a slight tightening of my stomach and never painful. I wore compression boots on my calfs to prevent blood clots since I wasn't moving around too much. Nurses came in and out periodically to feel my stomach and check my reflexes. I started to settle in for the long haul and expected to be in the hospital for the next 3 months.

Jason's parents were so nice and brought me a tree, nativity and presents to make my room feel a little more like home. 

My goal was always "stay pregnant."

I think Jason had it the worst during the week I was on bed rest. He slept on this couch/bench that converted into a bed. It didn't look too comfortable, but at least it was long enough for him. I was so happy to have him with me as much as I did—especially at night. It would have been hard for me to fall asleep alone. Jason was also running back and forth from home and the hospital every day to get me things I needed and also he could have a break and be human for a few hours and do things like go to the gym and shower. We're lucky that the hospital is only 15 minutes away from my in-law's house. 

Any time I started to think about not being able to go outside or even leave my room I just thought about what would happen if I had never gone to the doctor. I probably would have had the baby the day I was admitted to the hospital. There were so many things that happened to lead me to exactly where I was supposed to be. I knew that I was in the right place with the best care. Every day I stayed pregnant was better for my baby and gave him a better chance of survival.

For the five days leading up to Christmas Day, I got to open up a present every night!

So many people came to visit me while I was in the hospital! My church bishop came several times, Lauren & Steven, Brooke & Christian, Katie & Brian, Stephanie and of course Jason's family. I am truly grateful for everyone that came and brought me games and books to keep me entertained! It meant so much to me and really improved my spirits. Thank you also to everyone who has sent us uplifting texts, Facebook messages, cards and kept us in your thoughts and prayers. We know our little Eli has been blessed because of you.

–Birth story to follow in the next post–

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1 month!

Last week was a stable week for Eli. Although he wasn't making much improvement, he wasn't going backwards either, which everybody was happy about. The doctors have gone up and down on the amount of milk they feed him as well as his ventilator stats to keep him happy. Jason held Eli for the first time last Tuesday. As long as he is stable, we can hold him every day for 1-3 hours. We love our kangaroo time!

Eli with Jason, Grandma and Grandpa!

The beginning of this week started off a little rocky. On Sunday night, Eli was having some difficulty breathing, digesting and maintaining his temperature. He was not expiring enough air so his carbon dioxide levels were high and he needed to breathe a higher oxygen percentage than normal. He also had been really sensitive when the nurses worked on him during touch times. 

After doing blood work on Sunday, the only problem was Eli's red blood cell count was low. The doctors ordered a blood transfusion because Eli's bone marrow is still immature and unable to produce RBC fast enough. The transfusion would aid in his oxygen exchange as well.  On Monday his hematocrit was still low so they gave him another transfusion. The doctor was worried that he could be getting an infection so they started him on antibiotics and sent off blood, urine and respiratory cultures. They also wanted to do a spinal tap to check for meningitis, but since they started him on antibiotics right away, the results would be skewed. Eli also had another echocardiogram which showed his PDA has reopened. This can make it hard for him to get enough oxygen throughout his body. We hope it will close again on its own in the coming weeks so he will not need surgery.

So far, nothing has come back positive from the cultures and Eli is still an active little boy! The nurses have even been able to turn down the ventilator stats and he has been tolerating milk a little better this week.

Today Eli is 1 month old! He weighs 3 lbs 8 oz. With the blood transfusions and antibiotics, Eli is full of fluids. He has started a round of diuretics to help flush out the extra fluid, but for now all the puffiness makes him look like a completely different baby! All of the nurses comment on how big he is since they saw him last. 

Keep your fingers crossed the cultures stay negative! We appreciate your continued prayers, love and support.

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29 Weeks Tomorrow

It's crazy to think that Eli will have been in the NICU for three weeks on Wednesday. Time has gone by extremely slow, and has also whizzed by us at the same time. 

Good news:

1. His arterial line came out and he's pretty stable, so Emily gets to hold Eli tomorrow!
2. The ophthalmologist checked his eyes for yeast today and found nothing.
3. His blood gases are getting better little by little.
4. They started giving him pedialyte yesterday and he tolerated it well, so today they are giving him breast milk.
5. He is now weighing in at 2 lbs 12 oz! (His birth weight was 2 lbs 7 oz.)

We did have a little scare Friday that had to do with Eli's Ileostomy. Ever since the surgery meconeum has been leaking out of the mucus fistula. This is normal, but we started noticing that the stoma was getting darker and darker which is really bad. When the stoma gets darker, that could mean that the intestine is beginning to necrose.  A surgeon was called in to check it out, and what he found made us all breath a sigh of relief. The darkening of the stoma was caused by a build-up of dry meconeum, and the stoma underneath was pink and looked great! 

Reading back over the last paragraph, I realized there are a lot of words that I myself just learned. So I'm going to provide some definitions. Just in the last 3 weeks, we have learned SO much. 

Definitions:

Ileostomy - a surgical operation in which a piece of the ileum is diverted to an artificial opening in the abdominal wall.

Ileum - the third portion of the small intestine, between the jejunum and the cecum.

Meconium- the earliest stool of an infant. Unlike later feces, meconium is composed of materials ingested during the time the infant spends in the uterus: intestinal epithelial cells, lanugo, mucus, amniotic fluid, bile, and water

Mucus Fistula - The non-working stoma in a loop ileostomy. The mucous fistula can be the second of two stomas in a temporary ostomy, or the second opening in a single loop ostomy stoma

Stoma - an artificial opening made into a hollow organ, esp. one on the surface of the body leading to the gut or trachea.

Necrosis - the death of most or all of the cells in an organ or tissue due to disease, injury, or failure of the blood supply.

There is another couple in the NICU in a similar situation to ours. They are from Colorado and were visiting family here in Dallas for Christmas. The wife started feeling contractions, so they went to hospital and later that night/morning (26th) their baby girl was born. She was only at 25 weeks. She has been doing great until yesterday when she had a similar surgery to the one Eli had, except her was a lot more severe. We're hoping and praying that she gets through this. 

This week has been filled with little improvements and little setbacks, but overall the trend has been towards improvement. Thanks to all our friends and family who have been such a great support over the past few weeks. This past Fall I interned at Southwest Airlines and my last day was the 19th of December, but my work group has continued to be a great support. They threw a baby shower for Emily before she got admitted to the hospital, and just this past week they took Emily and me out to lunch. You've probably heard that Southwest is a great place to work, and I think that explains why. 

Let's hope this week is another good one!

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No News Is Good News

Sorry we haven't written in a few days. Just know that "no news is good news"—most of the time. Eli has been doing well recuperating from his surgery. His ventilator levels go up and down depending on how tired he is. Today his levels went up a little bit, but that's not the end of the world. The trend is good, so if he continues on like this, he will most likely be off the vent in a week or so and back on CPAP. Emily won't be able to hold him again until next week.

We're crossing our fingers, but there haven't been any more positive fungus cultures! If one or two more days pass without a positive culture, Eli's PICC Line can stay in. If a positive culture does come back, he will need a Broviac Catheter.

Today Eli was very alert and looking around a lot. His skin color looks really good, and he seems very active and content. Ever since his umbilical arterial line came out, he's been getting almost daily IV's (IV's don't last very long in premies). They usually put the IV's into his feet, but today they gave his feet a break and put the IV into his head.

Right now things are pretty calm. He has great doctors, and has been receiving excellent care from the nurses.

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Recovery

January 5, 2014

27.6 weeks

It has been pretty calm the past 2 days since Eli has had his surgery. He has been on pain medication which has kept him fairly sedated. The doctors told us to expect that he would be more dependent on the ventilator as he recovers. His belly looks a little distended, but it has only increased in size by a few centimeters. They still aren't giving him any food; they will start feeding again when he's a little more stable. 

The quantity of blood coming out of his lungs is decreasing quite a bit. We're thinking the closed PDA is helping with that. The lab is continuously checking his yeast cultures, and today another one came back positive. The doctor told us that if another culture comes back positive, they are going to remove the PICC line. This is going to be problematic, because it is through the PICC line that Eli gets his TPN (nutrition). 

Eli's PICC line doesn't go to the heart. His goes just past the shoulder.

For a few days, Eli will get his nutrition through IVs, but IVs only last a day or two. The next central line they are going to try is called a Broviac Catheter:

It is an IV line placed into a vein in the chest by a pediatric surgeon. It is designed for long-time use so that many painful needle sticks can be avoided. It is used to give medicines, blood transfusions, fluids or nutrients. We hope the infection clears soon so he doesn't have to have the Broviac, but it sounds like it's inevitable. 

Considering all that Eli has gone through, he is doing very well. We hope the infection clears soon so he can focus more on breathing and getting bigger. 

Jason and I have been listening to this song called "Happy" by Pharrell Williams on the ride home from the hospital recently:

Stay happy, and positive. That's what we're going to do.

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