Justin Day 8 in the NICU

10:15 AM  post:

We slept under the oil can tonight….so we could get up “oily” this morning. Well, I woke up early. Let Brian sleep until 5:20 or so before I woke him up. We were out of the door by 6:10 so we could be in Justin’s room early enough in case the cardiologist came by early. There isn’t a whole lot of information on timeframes of doctors or treatments. Basically the nurses are given orders, follow the orders and sometimes it seems like they aren’t supposed to give opinions on anything! A bit frustrating but this is a teaching hospital and we are learning as we go.

So, back to the reason we are here early. We thought that if any doctors came by early, we would need to be in Justin’s room if we were going to catch them.

Around 9 or so, Dr. Hough-Telford (a first year resident assigned to Justin) came by. She is very nice and we have talked to her before but I didn’t ask her much about how the assignments work. So, she is assigned to Justin. She said she was in the middle of something yesterday and couldn’t get away to come see us last night (which is why Dr. Johnson stopped in).

Dr. Hough-Telford said that Justin looked great, seemed to be doing great (to her). She told us that the CT came back and he definitely has a right aortic arch (we knew this already). He does have 2 small VSDs (ventricular septic defect) between the two pumping chambers. This means he has a couple of small holes in his heart. Not uncommon (most babies are born with small ones in the top two chambers) and most fix themselves on their own. His are very, very small so that’s a good thing. We’ll have to follow up with the pediatric cardiologist in a month or two.

The doctor also said that she didn’t know why we wouldn’t be able to leave soon. Of course, she said that it is up to Dr. Toms and we should find out something by the time the doctors make their rounds. Crossing our fingers that today will be the day…maybe?

Troy is still in Auburn and Brian is in Birmingham. In the event that he is released today, we will need someone to pick up Troy and entertain him for a bit until we get home….

2:35 PM post:

We got some great news!!! We are going home! Yay! Brian is working on logistics and getting Troy home from Goli’s. Thanks to Laura – she found a car seat and will pick up Troy. My mom is headed home to pack and get to our house.

We have several videos we have to watch before we can leave. Brian is going to leave his car at the hospital so we can all ride home together. We have to go by L&G’s and get our luggage and will be on our way home!

We are beyond excited! This is a great way to find out we’re heading home. Praise the Lord!!!!!

Justin Day 7 in the NICU

My first night “alone” as a mother of two was pretty good. G cooked some delicious salmon last night. It is so nice to be fed! Made it very easy last night. I got to bed and woke up early this morning to get going.

Arrived at the hospital before 8 so I was doing pretty good.

Magen is the nurse today and she has a nursing student named Lindsey (from Auburn) with her. They have taken great care of Justin today!

Had an appointment with the lactation consultant, Kristi, at 8:30. Justin latched on and did great! Yay! Gives me hope to be able to help him with getting milk and I know that it will work. Don’t get me wrong, it wasn’t immediate but I tried to keep calm while he got quite upset. He eventually calmed down and did quite well. Kristi said that me being patient and persistent was very helpful. I needed to hear that – and it worked!

So then Justin had an appointment for the CT Scan at 9:45. Magen came in to give him some medicine (Ativan) to calm him down before the procedure. I thought it would make me sad but it was fine.

30-45 minutes later, they rolled Justin back in the room. I said, “Wow, that was fast!”. Remember that IV he got yesterday? You know, the one that took 3 tries to get in again? Well, that IV came out. Why? A technician flushed the dye in his IV too quickly and blew it out. Joy! So he needed his IV back before he could go back to CT for the scan. Nurse Frank was called in – after all, he’s the specialist.

I had to take care of the pumping stuff so I hid behind the curtain in our room. Little guy was screaming. When I finished, I noticed that he might need some help. I tried calming Justin down while Frank looked for a vein. It looks like his skin is so fat that they couldn’t find a vein. Brian arrived about the same time. J was screaming while he was being held down. The sticks didn’t bother him as much. Brian was having a hard time with it so we walked out of the room for a few minutes. Anyway, three tries later (yes, again), he was all set in his left hand. Poor thing! He’s been stuck quite a bit lately.

He was pretty sleepy from the time he got back from CT the first time until his appointment for the next time. Nursing was not a good idea at the time. So, off he went to CT again at 2:00. I asked the nurse to politely tell the lab technician to be careful when injecting the dye. Magen said she would come after the technician if the dye didn’t work well!

Brian and I grabbed some lunch and by the time we got back the room, or 3:45, he was done! He was still pretty sleepy.

So around the same time, I received a call from Deborah, Mary’s sister, asking if I could take some pictures of her little girl born at 26 weeks. She is 3 or so days older than Justin. Deborah was going to hold Tera for the first time! I headed up to the RNICU and overheard a parent saying that the baby didn’t have a heart beat. I knew it wasn’t good. I headed over to Deborah and took a few photos. One of the most beautiful things – a mother holding her baby for the first time. I’ll see if she would be okay with me posting a couple of those photos.

So I headed back to the room, it was about 4:00 or so. The doctors had not made their rounds and we found out that they were busy with a baby who was in critical condition. I think it was the lady I passed in the hallway.

We asked to speak with a doctor, anyone! Dr. Johnson, a resident, came by and said that the CT scan found that Justin has a right sided aortic arch – DUH! He said that is all he could say about the scan. The Pediatric Cardiologist is the best to go over the results. I asked about circumcision and he said that Justin’s regular doctor would need to perform the procedure.

We stayed at the hospital until after 8. We met Joanna, the night nurse who was great.

Justin Day 4 in the NICU

Monday. We arrived around 9 this morning. Had to stop by Target on our way in. Traffic was a booger today. How, in four short years, have we forgotten about the traffic in B’ham? Day four in the NICU. Really? Time is flying by. Justin is getting cuter and cuter. His little face is not as swollen. The milk came in! Yay!

Justin was on 28% oxygen when we arrived this morning. J’s nurse is Lindsey and she is fantastic! She gradually weaned him from the oxygen, I was able to hold him for quite a while today and he did fantastic! Fed him with a bottle without any oxygen and he did great. Lindsey still needed to keep him in the isolette so when I wasn’t able to hold him, he had to stay in the isolette.

Dr. St. John (female) is his doctor today. She said he was doing fantastic, eating like a “pig” – yes, those were her words and we needed to get him out of the NICU!

We think he’s going to be strong! He’s definitely a little fighter. Still is on fluids but is taking the bottle well today. Yesterday (forgot to mention) he almost was put on a feeding tube because he wasn’t taking the bottle. Turns out he needed a bottle nipple that mimicked his pacifier (a Soothie pacifier). Yes, it was my idea :) I thought that we needed to try another nipple before sticking a tube down his throat! That did the trick!

The plan today was for Brian to stick around and wait for the orthopedic doctor to come for a consult. We asked the doctors during rounds this morning when we would see the orthopedic. They said they would check on it but did say that they thought we would see someone today. Brian’s parents stayed in town to watch Troy and wait on the orthopedic doctor. Brian’s parents came by. Brian and I watched Troy in the family room (which has a little kids play area) while they visited with Justin. Memama held little Justin for the first time.

By 4 p.m., we started asking about the orthopedic doctor. Every answer was that it was being checked on. By 5:30 p.m., we were told that it probably wasn’t going to happen today.

Brian made arrangements with his parents to stay another day so he could wait on the orthopedic surgeon.

Lots of visitors today! We are loving the visitors. I can hardly keep up with the calls, text messages and emails. I’ve almost given up! Still very emotional so I’m not quite ready to talk to friends or family on the phone.

We are still staying with L&G (Brian’s aunt and uncle) and left around 7 or so.

Justin Day 3 in the NICU

We arrived at the NICU around 8:00 this morning. Justin was down to 48% oxygen! Such good news  because it told us that he is improving. Patti is our nurse again. She said that he could start receiving milk per the doctor’s orders. He would need to receive it via a bottle.

Not a huge fan of bottle feeding an infant but we had no choice! PPHN babies who are still on oxygen should not be nursed. They cannot regulate their oxygen levels on their own so bottle feedings are the way to go. The milk was not quite in yet, Patti said that she could wait another day since he was on IV fluids still. He is still receiving everything he needs through the IV.

He gradually decreased the oxygen a little at a time. I think by the end of the day, he was at 40% oxygen. Still in the isolette but he was doing better and better.

Memama and Grandy brought Troy by to visit. This visit was much shorter than the one before (maybe 10 minutes). He was distracted by all of the “bright lights” and wanted to get in the isolette. Crazy child!

Today we saw Deborah whose baby is also in the NICU. Deborah is one of my middle sister’s best friends. Her little girl was born at 26 weeks, 2 pounds 5 ounces and was either 3 or 5 days older than Justin. I got a little upset when I saw her. Hard times!

We left the hospital around 7:15 or so.

Well…..He’s Here!

So proud to announce the birth of Justin on Friday, February 25, 2011 at 6:28 in the morning. He is 8 pounds and 21 inches long. He was born at 40 weeks and one day gestation.

I’ll give a birth story later but for now, please pray for our true little miracle. From the time I found out I was pregnant, I knew that this child would be special. He is already (at less than 2 days old) living up to my suspicions.

From the time he was born, I was able to hold him for maybe 15 minutes and the nurse thought he needed a little suctioning. Ended up he needed a bit more than that. After being taken to the nursery, we found out three hours later that he would be air lifted (via a jet) to UAB.

He remains at UAB now. He’s been diagnosed with Persistent Pulmonary Hypertension of a Newborn (PPHN). Basically his little body wanted to stick with circulating what it needed via the umbilical cord. It is much more complicated than that but I think that is easier to comprehend. Well, once a baby is born, the nutrients and everything the baby needs no longer is funneled through that cord.

Justin needs oxygen to survive right now. Not such a bad thing considering many other scenarios there could have been. We don’t think he will need surgery because he is responding well to the oxygen and has also responded well to the weaning of oxygen.

We haven’t been able to hold him since those few minutes I held him. Brian, I am sure, is a little sad that he hasn’t been able to hold his newest son yet. Just wanted to update the blog in case anyone is looking for updates. Mama is tired and is about to go to bed. Please pray that we will be able to hold our little boy – hopefully tomorrow.  That would be nice.

A few photos:

Justin, before being taken to the ambulance and then off to the jet. The crew brought him by so we could tell him goodbye.

One of the sweetest people, Sherry. She took care of Justin in the transport vehicles and on the plane. I asked if she would text me a photo of the jet and she texted me that plus a photo of him loading into the plane, on the ride, going to transport, etc. Super sweet person I JUST met!

A few photos of little Justin. Long fingers and toes. With bilateral club feet. We’ll learn more about his treatment when he’s stabilized. He will need to be stable before anyone can “fiddle” with him!

Troy meeting his brother for the first time. He waved to him and kissed the isolette.

Our family of four. Wow! So crazy to put that in writing!

On a side note, I think Troy might look like his father…

Troy waving bye to his brother. Troy was very sweet but was also very interested in trying to open and close the isolette. I think he would have been happy to be inside with the “bebe” as he called him.

Grandy, Memama, Jeff and Amy came to visit. They were on “Troy” duty and it was so wonderful to not worry about him!

Papa John and KK came and stayed a while. My Mom, I think, was on “Elyse” duty :)

Justin Day 2 in the RNICU

Had a fairly decent night of sleep. I was trying to pump and get things going so I woke up a couple of times to take care of business. Brian was exhausted so I let him sleep. I would describe my condition at the time as dazed. Not quite sure about what was going on and not sure about how long we’d be around.

We stayed in the UAB family sleep rooms. Again, they’re like a hotel room slash dorm room. Comfortable enough but I knew it was not going to work out for me long term. The shower was across the room and was locked so we had to get a key to go in there. I felt pretty good considering all that we were going through.

When we got dressed, ready and checked out of the family room, we headed to see Justin. He was still in the isolette with monitors attached to him. The monitors were keeping up with his heart rate, oxygen saturation levels as well as his respiratory rate. He was also inside a thing called a superdome which gave him extra oxygen. Then, he was inside the isolette, called a “Giraffe” which maintained the oxygen and humidity levels. This was Saturday morning. He was on about 80% oxygen. Pretty uneventful day as far as Justin goes.

He was being treated by Dr. Carlos. Dr. Carlos went over PPHN (Persistent Pulmonary Hypertension in a Newborn). He explained that Justin’s body  was basically confused and was trying to pump oxygenated blood to the umbilical cord when it needed to be pumping through the lungs. It’s something that can be corrected with medical intervention. Justin needed to be on oxygen and the hope was that he would be gradually weaned until he was breathing room air. Dr. Carlos said he thought Justin would be fine but did say that sometimes babies respond immediately to oxygen treatments, others take about 3-4 days and others require bypass surgery.

Dr. Carlos also said that Justin had an echocardiogram performed the day before (Friday) but the pediatric cardiologist needed a repeat echo because he couldn’t see what he needed.

We also discussed his club feet and were told that someone from pediatric orthopedics would be coming on Monday.

We weren’t able to hold him but could reach inside the isolette and touch him every now and then. It couldn’t be opened for long because it would let in too much room air and would affect the oxygen being given to Justin. He was also being given an antibiotic for preventive measures as well as being fed fluids only via an IV. We were told that he didn’t need milk yet.

We had several visitors: KK, Papa John, Memama, Grandy, Troy, Jeff, Amy and some others I cannot remember right now!

Brian’s aunt and uncle live in town and were kind enough to offer for us to stay with them. They have plenty of room and their basement is practically another house with a kitchen, living rooms and  a couple of bedrooms. It is a GREAT place to land! With all of the commotion and excitement, I really wanted to be near Troy if at all possible. My in laws have been angels. I know I’ll never be able to show them enough gratitude for what they have done. When Justin was born, their plan was to come and stay at our house and watch Troy for the few days we were in the hospital. That means they packed for a couple of days.

So that we could be close to Troy, they brought him to Birmingham and watched him at Brian’s aunt and uncle’s house. Troy was the BEST child! So happy and seemed to be having  a ball. Of course he was being spoiled, too. He learned how to climb and descend stairs…and apparently loved it!

They brought him to the hospital (siblings are the only children allowed under 12 to the NICU). He was wearing his “big bro” shirt I made him. I was holding him and brought him close to the isolette. I told Troy that his baby brother was inside. He did say “bebe” and I asked him to blow him a kiss. Troy leaned over and kissed the top of the isolette. It was so sweet! Then, of course, he was more interested in opening and closing the sides of the isolette. I sat in a chair a while and let him touch the sides. I opened one of the doors of the isolette and asked Troy to wave to his brother. He obliged and then realized that he could open and close the sides. “open” became a new word for him!

Since Troy thought he should play with everything, it was time for him to go! Brian and I stayed a bit longer and left a little after 7 or so that night. We felt that the nurses would be taking complete care of him that night. Patti was our nurse and was fantastic!