Update: May 29 to May 30

May 29th:

Today has been really hard. It was the first day that walked into the NICU and didn't receive outstanding news. Jack is struggling breathing. It is funny to say that because Jack has a respirator that is breathing for him. They are mostly worried because his oxygen levels have been going high and low a lot with the same respirator settings and he seems very sensitive to any change. He is no longer on room air (21% oxygen) going in through his respirator and has been going up to 60% oxygen in order to keep his blood oxygen levels in the normal range. He has become what the doctors call a "chronic" patient now. Basically that means that his breathing issues have continued for a few days now and it is no longer possible that it is just an anomaly. X-rays of his lungs show that he may be experiencing respiratory distress syndrome. They are now adjusting settings of his respirator and watching what happens. If things don't improve they will consider switching to a new respirator to see if that helps. It seems like this kind of thing is not unexpected, but it still is hard to take in.

They are also doing full blood tests to make sure that he doesn't have an infection or anything else that may be causing his breathing problems. They are also changing his feeding tube to bypass his stomach and put milk directly into his intestinal tract. Now that his feedings are getting higher and his breathing worse, they worry that he may regurgitate some of his milk and that the respirator will then push the milk into his lungs, so they are trying to limit what goes into his stomach. On a positive note, we got to see a glimpse of his eyes last night! It was only for a split second, but we'll take it! They are thinking that they may be able to turn off his bili lights today or tomorrow so we'll get to see them often!

May 30th:

Today went from hard to amazing in about 1 second. When we arrived at the NICU the doctor and nurse gave us an update on Jack's condition. Jacks oxygen needs have decreased over the past 24 hours (he is usually sitting between 30% and 40% oxygen going in through his respirator) and a new chest X-ray from late last night showed his lungs in slightly better condition. He is still on some pretty high settings on his respirator, but they are hoping that he will cooperate today and they will take some of those back down. But hey, at this point a move in the right direction is a move in the right direction. He also received another blood transfusion (his third) yesterday as the blood results showed him slightly anemic. Other than that his blood tests came back normal (no infection). Here is to better news than yesterday!

After the update Molly and were sitting with him. I think we may have looked slightly depressed because I feel like the nurse was being ultra nice to us. We were thinking about heading out and the nurse came over and said it was time that Jack associated our voices with something positive. The nurse proceeded to move his bili lights, pop off the top of Jack's incubator, take the side down off his incubator, and take off his eye protectors (I call these his sunglasses, just for future reference). She told us to hold him firmly on the head and the feet like we had been doing through the doors and to just sing to him, read him stories, and talk to him. She told us to pay attention to his facial expressions and that they would tell us how he was feeling because it was time that he started associating our voices with positive experiences. We got to hold him and be right next to his tiny little body for the best 90 minutes of our lives. We sang primary hymns, read him a book, and just told him about the great people who love and support him. You better believe that we treasured every minute of this. He seemed so peaceful. He opened his eyes a bunch of times (this was the first time we really got to see his eyes). It was amazing. Jack's oxygen levels stayed stable the whole time and it was a good rest from the constant beeping of the alarms saying his oxygen levels were high and low. The nurse came about halfway through (I thought she was going to tell us we needed to be done) and just said, "see, sometimes all they need is some touch and love." After about an hour and a half the nurse finally came over and said we should probably close him back up. She also said that now that he is more stable we will be able to that more often. I think Molly and I were glowing the entire time and we walked out of the hospital on cloud 9. I just kept smelling my hand because for the first time, it smelled like Jack.

Here are some pictures from our experience:

Our first family photo:

Jack and Molly:

Jack and me:

Jack's eyes:

Jack and Dad giving a thumbs up:

Overall, I would say it has been a good day!

As unexpectedly living across the country with a baby in the NICU has its fair share of financial implications a fund has been set up to help us with medical, living, and transportation expenses. Any gift is very appreciated, but don't feel obligated to give; however, do feel obligated to pray for us and/or send positive thoughts our way.

Update: May 23 to May 28

May 23rd:

Today we received the results of the heart ecco. During the ecco they look for two things: First, they look to make sure that all of the chambers in the heart developed and are working correctly and second, they look to see if the ductus arteriosus closed. The ductus arteriosus is a blood vessel that allows blood to bypass the lungs while in the womb because the baby isn't breathing in the womb. It is common in premies to not have this duct close and thus not get enough blood to the lungs once they are born. We were pleased to find out that the ductus arteriosus is closed and that all four chambers of his heart are developed and working. When they are this small, there is the possibility that the ductus arteriosus opens back up, so it is something that they are going to keep a close eye on in the event he has any lung problems.

May 24th:

Jack has been started on breast milk now and after a few successful 1/2 milliliter feeds every 6 hours they are upping his intake to 1 milliliter feed every 6 hours (he is a big eater). He is still doing great. He has a respirator that breathes 450 little breaths every minute for him. They say the smaller breaths are easier on his fragile lungs. He is currently on room air, which just means that the machine is putting in air that is 21% oxygen. This is great because it could be an indication of good lung development, but the doctors also think he might still be in a "honeymoon" phase.

May 25th:

Jack has been fully digesting his milk so far. They have a feeding tube that goes into his stomach and when they want to see if he digested all his milk they use a syringe connected to the tube and pull up all of the air in his stomach and see what comes up. If milk comes up they call it a 'residual' and that means he didn't absorb the milk, but if nothing comes up then it means his system is taking the milk. Good news again as so far he has been clean coming up, which means he is digesting his food. They had turned down his jaundice bili lights, but his jaundice levels went back up. They are keeping it down for now, but said they will probably have to turn in back up.

May 26th:

Happy one week Jack! We can't help but feel like we have beat the odds so far. Jack received his second blood transfusion today. In order to make sure his breathing and nutrition is correct they do a lot of blood tests, so they monitor every drop of blood that comes out because they know he can't reproduce blood fast enough for them. They also told us that they are going to give Jack a PICC line today. This is just a more permanent IV that is going to replace the IV in his umbilical cord. Jack has been having some small problems breathing, but it seems like we shouldn't worry too much yet.

May 27th:

When we came in today we were surprised to find Jack situated on his tummy. He looked so comfortable and the nurse said that he had some very consistent breathing while being situated that way. His back is hairy! Jack's eyes also opened today. His eyes had been fused shut since birth which is normal. The nurse tried to get him to show us his eyes, but he didn't want to cooperate. He wrinkled his face up and you could tell he was so mad to be bothered.

May 28th:

Jack's breathing is starting to concern the doctors and nurses. His blood oxygen levels have been up and down a lot on the same respiratory settings. They say it is normal for premies to be sensitive to respiratory changes, but his change from being really good to not so good could be an indication that his ductus arteriosus (see May 23rd) opened back up. They ordered an ecco and it came back clean again and showed the ductus arteriosus closed. They are going to be monitoring his breathing closely to see if this is just a fluke or chronic. His feedings are up to 2 milliliters every 3 hours and he seems to be tolerating those well.

As unexpectedly living across the country with a baby in the NICU has its fair share of financial implications a fund has been set up to help us with medical, living, and transportation expenses. Any gift is very appreciated, but don't feel obligated to give; however, do feel obligated to pray for us and/or send positive thoughts our way.

Update: To Bring us through May 23

May 20th:

Molly got to meet Jack for the first time at about 5 AM. The nurses kept getting new admits and couldn't find enough time to bring her up until then. Jack is doing awesome. His blood pressure has been low, so they are medicating to get that up for now. They think his blood pressure is probably just low because of the magnesium in his system. At this point they are cautiously optimistic as they see a lot of premies have a 24 hour "honeymoon" phase.

May 21st:

Molly got to 'hold' Jack for the first time today (she always gets to do the fun stuff). Everything is still the same. Jack's blood pressure is back up with the medicine. They are scheduling a head scan for tomorrow, so probably more updates then.

May 22nd:

They did his brain scan this morning. There was a mild level 1 bleed which is very very common in premie babies. They said that the blood will reabsorb into his brain and that a bleed at this level is no concern for future developmental problems or brain damage. They expect the bleed to stop once his blood vessels grow stronger which may take a few weeks. For now, they do a weekly scan to make sure it doesn't grow.

In other news, Jack is now off his blood pressure medicine! This means they are going to start feeding him breast milk. They will be starting him off with 1/2 milliliter every 6 hours and move up from there to full feedings of 13 milliliters every 3 hours. The nurse also let Molly change Jack's diaper today. He has been urinating which makes the nurses and doctors happy. Jack was so excited to have Mom change his diaper that he tried to pee on her.

We also found out that they are releasing Molly from the hospital today (a day early). This is bitter/sweet news. Bitter because we will no longer be just down the hall from our baby (and we have to figure out how to live across the country), but sweet because it means Molly is healing well. It is a whole new whirlwind of emotions and reality will be setting in soon.

A few pictures to see in perspective how big he is:

May 23rd:

Jack is still doing great! He got a new Phoenix Nest (the little blankets they have him in. Chelsea and I decided it was a Phoenix Nest). They also put in a blanket that smells like Molly. Molly got to take his temperature again (she needs practice as she hasn't been successful yet) and she also got to change his diaper again (I also changed it earlier and let's be honest, I need the practice here). They are doing an Ecco on his heart today and if all looks good they will for sure start feeding him breast milk today. He is still rocking his oxygen levels and though the respirator is breathing for him, he is not needing additional levels of oxygen. They also turned his bili lights down as his jaundice levels are decreasing.

As unexpectedly living across the country with a baby in the NICU has its fair share of financial implications a fund has been set up to help us with medical, living, and transportation expenses. Any gift is very appreciated, but don't feel obligated to give; however, do feel obligated to pray for us and/or send positive thoughts our way.

The Beginning

Let me give some background to our story. Molly and I are both born and raised in Utah. All of our family with one exception live in Utah and the farthest apart they live is 1 hour. After I graduated from BYU, Molly and I moved to Virginia, so that Jordan could start his new job in Alexandria. We stayed in Virginia for about 19 months and then decided to move back to Utah to be closer to family and start our own family. So remember during this story, Molly and I live in Utah.

Molly and I's summer was looking perfect. Molly was pregnant and due on September 5 and we decided early on that we wanted to take advantage of the last summer of just us. Molly loves the outdoors (it's growing on me), so many of our plans included outside activities. We had a trip to St. George planned for a cousin's wedding, a trip to Zion National Park planned, at least four camping trips planned, a summer of fun using the Salt Lake Connect Pass with friends, and to kick things off a trip to Virginia to see my brother graduate from law school. We were excited to start our summer adventures and didn't realize that the biggest adventure of all was going to hit us on our inaugural summer trip.

Molly and I arrived in DC close to midnight on Friday, May 16th. Molly had been very uncomfortable most of the flight, but attributed this with just the normal uncomfortableness that comes with being pregnant. A quick side note: I for one am glad that I will never have to go through the uncomfortableness associated with pregnancy. Us men do have a big advantage in this whole reproduction thing both on the creation end and the actual bearing end. End my side note. The trip began with adventure as we went to pick up our economy rental car. The Alamo employee looked at us and said, "I only have two cars left, the minivan or the 4-door Dodge Ram 2500." We quickly chose the van because we had a 2 hour drive to Charlottesville and wanted the better gas mileage. As we were driving out, we heard the people behind us say, "Isn't there any other options? We have a big family." In hindsight, Molly and I probably should have offered to switch them, but we didn't, and we just drove out.

We were staying with some friends in Alexandria for the night and arrived quite late. We chatted for a while and then went to bed. Molly woke up in the night to use the bathroom and noticed that she had started bleeding a little. It wasn't enough to really be concerned, so she came back to bed. A few hours later she woke up again with a lot more bleeding. We decided that we should definitely go to the hospital to check things out before we got in our minivan to drive a few hours.

Upon arriving to the hospital, we were immediately sent up to Labor and Delivery. According to Labor and Delivery, the hospital pretty much sends anyone pregnant up to Labor and Delivery no matter what. The nurses told us about a lady who had been in a car accident that they sent up to Labor and Delivery from the ambulance. She had a few broken limbs and a neck brace on when she arrived in Labor and Delivery, so they quickly sent her right back down and monitored her baby from a place where they could actually work on fixing her and not just delivering her baby. Anyways, upon arrival to Labor and Delivery they started a standard work up of blood and urine tests to see if they could locate the problem.

The doctor came in and started talking about how dehydrated Molly was and that this is all probably because she is dehydrated. It was almost a scolding for coming in to the emergency room with such a small problem. The doctor decided to take a look anyways and found that Molly was dilated to a 4. His tune quickly changed as he looked at Molly and said that things weren't looking too good and that she wasn't leaving the hospital until the baby was born.  

I look back on my Facebook page and I have to laugh a little because it is a true testament to the fact that Molly and I had no idea what was about to hit us. On May 13 I posted "Garden planted! Hope it is fruitful!" along with a picture of our small little garden. On May 16 I posted "Here we come to celebrate Cody's graduation! — traveling to Washington, District of Columbia with Molly DiFrancesco Rogers from Delta Terminal - Salt Lake City International Airport." And then we were in a hospital across the country being told that we weren't leaving until our baby came.

I am pretty sure my emotions went into survival mode at that precise moment. I kept looking back and forth between this doctor, who just seconds ago told us she was probably dehydrated and my wife, who at this point was crying and hyperventilating. I knew immediately that I was going to have to be strong in this moment.

Being strong in that moment was easy, until I actually had to talk about it. We had already called our parents once to let them know we were in the emergency room, but this time I had to call and tell them that "the likelihood of this baby being born this week is high." I had to leave the room every time I talked to someone because I just couldn't hold back my tears and emotion when I actually had to speak what was happening. I knew that Molly had to see me strong. I most distinctly remember calling Chelsea, Molly's twin. I was getting through until she asked, "how are YOU doing?" I think that was the first time I really had thought about how I was doing and realized that as much as I was playing survival mode strong on the outside, I was a wreck inside. I barely got it out between a flood of tears and emotion, but my response was "I am good when I don't have to talk about it."

The next 52 hours were pretty crazy. I learned a lot about what doctors do for premies.

At this point, Molly's Mom was on flight to DC and my family missed a few graduation things and came up from Charlottesville .

They weren't sure how long Molly was going to be able to keep the baby in. The only thing the doctors kept saying was that it could be today, it could be this week, or it could be months from now, but what we do know is that you aren't leaving until you have this baby. At this point two drugs become important for the baby's development: steroids and magnesium. Steroids help stimulate the baby to develop his lungs and brain blood vessels faster and magnesium has been shown to decrease the likelihood of brain damage. The steroids take 48 hours to be fully active. It is a two shot combination that are given 24 hours apart and they want the second shot to have been in the system for 24 hours before birth. The magnesium is given on an IV, so it immediately went into Molly's system.

The first day wasn't too bad, but by the night Molly's contractions were only about 2 minutes apart and were 1 minute long. We felt bad because at this point they kicked my family out of the room and into the waiting area after only being there for an hour or so. Molly was in a lot of pain and was given the option of an epidural, but at this point you could tell that the nurse, doctor, and anesthesiologist disagreed about what Molly should do. The anesthesiologist told us that an epidural would make Molly's body relax, would likely induce labor, and may make Molly's blood pressure drop (combined with the magnesium). The nurse and doctor argued that the chances of Molly actually making it until 9 am (the next steroid shot) were slim, so we might as well make Molly comfortable. We chose the epidural.

I remember the look on the nurses face when the 7AM shift change happened and baby was still in. We made it to the next morning and the next shot was given. On the second day they pretty much touched Molly as little as possible so that no one induced any kind of labor. I felt really bad for her because they stopped letting her move as well. No laying anywhere except on her back with the bed leaned back. For the next 24 hours we experienced a miracle as we ended up making it to the 48 hour mark baffling the doctors. Her contractions had slowed to only 1 every hour. At this point they decided to bring an OBGYN that specializes in high risk pregnancy and the attending OBGYN in to make an evaluation. When they came in, they were very optimistic and talked about how she may be able to keep him in for a few weeks. After evaluating, the doctor said "In my 19 years of experience, I have never seen anything quite like this". He couldn't feel anything. He had no idea how dilated Molly was and couldn't find her cervix.

The next exam was an ultrasound which revealed that the baby was in the birth canal and the only thing keeping him in was Molly's water sack that hadn't ruptured. To make matters worse, he was in the birth canal bum first! Things got really scary really fast as the doctors tried to figure out how to deliver this baby as it would be very dangerous to deliver naturally with the baby bum first, but it is impossible to get the baby via c-section with him so low in the birth canal. The high risk and attending doctor had this conversation that you know probably happens a lot in the hallway, but not in front of the patient. The doctors decided it would be best to see if they could give the baby a push on the bum and push him out of the birth canal. On the ultrasound you could see his hand push the baby back up and then it was decided that an emergency c-section was going to happen.

The doctors looked scared and we were scared. Molly was crying and I was playing strong guy again for her. I remember that as soon as they pushed her out of the room, I lost it for a few minutes. They then brought me in to be with Molly and she looked so scared. They had a sheet up so that Molly and I couldn't see what was happening (grateful!). Molly told me I just had to keep looking at her, so that is what I did. We looked at each other with fear in our eyes about what was going to happen next. At this point baby is out and they announced birth time. All I wanted was to hear a cry from the baby. I just kept thinking if he could cry he would be OK. They brought him to the warmer that was right behind me and began working on him. No cry.

I kept looking back and forth between my son and my wife. Molly kept telling me I needed to only look at her. I finally said, "Molly, I love you and I am worried about you, but now I have 2 people to worry about." It didn't come out as rude or as short as it sounds and Molly understood that I was trying to take care of both of them. As I turned around, I saw that they already had an air tube in, so I knew I wasn't going to hear him cry. My mind immediately thought, how do I know he is OK now?

Then the nurse working on the baby started chatting with me. This was odd because on the first day in the hospital a NICU nurse and doctor came and talked to us and told us we shouldn't ask any questions or expect any communication about the baby's condition for at least 2 hours. It isn't that they were trying to be rude, but at this point they need to focus on baby and not answering questions. But this nurse, 5 minutes after birth was talking to me. She asked if I wanted her to take some pictures. I realized that in the rush of things I didn't even have my phone with me. She sent a nurse out to get my phone and then took some pictures of the baby. At this point I knew that if they were stopping to take pictures and chat with dad, then things must be going pretty good.

Back to mom: At this point I turn back to Molly. She says, "OHH, that is a lot of pressure, what are they doing?" The anesthesiologist (yes this is the third time I have used auto correct to spell that) promptly stands up, looks over the curtain, and casually says, "HMM, they are just putting your uterus back in." I will never forget the look of terror that went across Molly's face.

They then weighed Jack (this is when we decided on the name) in at 700 grams which is 1 pound 9 ounces and were ready to transport baby up to the NICU with dad coming along. As we left the paparazzi, AKA our families, were in the hall and tried to snap some pictures and we whisked by up to the NICU. I don't think any of them got really good pictures.

Well, that's the beginning to this crazy story. We are here for a minimum of 11 weeks, but probably a few more and have a long road ahead of us. We were so incredibly lucky to have had this happen in Virginia close to where we lived for 18 months. This is definitely the second best place to have had this happen as we have a network of friends and support in the area. We are staying in the basement apartment of a family that lives only 1 mile from the hospital (this is an amazing family) and Molly's old boss had an extra car that we get to use for the summer. My work has been amazing and is letting me work remotely for the duration of this experience. We have shelter, transportation, and a job, so we feel blessed.

Look for a post later today that will update you on the first 9 days we have been in the NICU.

As unexpectedly living across the country with a baby in the NICU has its fair share of financial implications a fund has been set up to help us with medical, living, and transportation expenses. Any gift is very appreciated, but don't feel obligated to give; however, do feel obligated to pray for us and/or send positive thoughts our way.