The Joys of the Johnsons: Rochelle's amazing story so far!

To say this hasn't been a trying time for everyone involved, would be an understatement, but God chose to put us (Shane and I) through this journey, and I know He will pull us through it. With that said, I will try to summarize as much as possible, as so much has happened in the first week and a half of her life. (Thank you SO much for all of the prayers, we greatly appreciate them!!)
So everything went a little crazy as I had her at 4:08pm on 11/6/14, thinking we were going to be able to stay there a few days and go home and next thing you know, we were being transferred to Santa Rosa Christus Hospital in San Antonio by 9:30am the next morning. I got very little sleep, just kept wanting to check on her in the nursery all that night, and pumping every 2-3 hours to try to start my milk production since she was only able to take IV fluids they were not able to give any of my milk at the time. The neurologist that was at my delivery, told me that it doesn't happen very often, but if I wanted to ride in the ambulance with Rochelle that I could as long as she was stable (and she was breathing on her own, and just had a replogle(a tube inserted to make sure the stomach is emptied since she was choking and not able to get it all out herseslf) and of course I said YES! I had just had a baby, but nothing was going to stop me, I felt great, showered the morning before, put on fresh clothes and we were off around 10:00AM heading from Victoria, Tx to San Antonio, Tx.

My mom does daily updates so I have compiled them in one blog post to keep everyone up to date.

11/07- Update-when born, Rochelle's oxygen level was low and her blood sugar was low so she was put on iv fluids and supplemental oxygen as needed. This morning, her blood gases are good, sugar levels stabilized, but they are worried about her intestinal tract. She sometimes gags on her own saliva and oxygen drops. Sheridan and baby Rochelle are in transport to San Antonio Santa Rosa children's hospital nicu. Original estimates are 2 week stay so I will be staying with Sheridan at Ronald McDonald house. Shane will stay home with brielle and will visit as often as possible. Mike will head back to Lockhart tonight.

11/08- Group update-Rochelle (R) slept well overnight. Lungs sounding better, not fully expanded yet, breathing on her own. Next system is to get bowels functioning normally and then will be able to start feeding by tube. Much more relaxed and comfortable today. Maintaining own body temperature. Yeah!

Rocky (my nickname for the little fighter) gave us a real fright earlier this afternoon. She was having a great day until at one point, she just stopped breathing briefly and even started turning blue. Nurse immediately intervened and all back to normal. This evening, she was breathing hard and then had her first meconium poop which is a great sign. Yeah!

11/09- Update-little Ro is doing well. She is peeing and pooping well. Her breathing is still too fast to start feedings yet. Dr. is monitoring blood gases, etc. Her levels are a little high or a little low but all is fine at this point.

Received diagnosis that little Ro has blood sepsis (not related to T13). Don't know cause. mothers are routinely tested before birth and Sheridan was negative. Anyway, little Ro is on antibiotics and hopefully it was caught in time. It does have a 10-30% mortality rate if not caught early.

11/10 update-breathing stable, visits by PT (physical therapy) and ST
(speech therapy). Rochelle (Rocky) will receive PT to help with muscle control and to help her gain strength. ST working on sucking strength. Rocky able to take a few drops of breast milk by mouth. Rest delivered by NG (nasal gastric) tube. She did well on first feeding. Skin still yellowish so starting on photo therapy (bright lights) for a few days. We can only touch her but not hold her during this time. Will receive antibiotics for 10 days for sepsis. Also getting LP (lumbar puncture/spinal tap) to rule out meningitis. Dr said she's a real fighter since she is doing well in spite of sepsis. Back to nickname Rocky. She's earned it already!

11/11-Little Ro is surprising the doctors and nurses by how well she is doing. Started bottle feeding with breast milk last night. The antibiotics are working. She should be off light therapytomorrow. Her fluid levels doing good. Digestive system was a little slow getting started but is doing well now. Amazing little girl!

By the way, her hair was shaved in case they needed to put in another IV but it had not been needed.

11/12 Update- continuing great news on baby Chelle (nickname given by sister Brielle). Feeding amounts have increased, neuroreflexes are better than expected, peeing and pooping well, reduced light therapy so she can be held for longer periods of time. She is still breathing a little fast at times. She will be getting some little gloves to help stretch out her hands and fingers. Sepsis bacteria is responding to antibiotics. Overall, excellent day!

11/13 update- we are in a 2 steps forward, one step back stage now. Drs are increasing her feedings but it is too difficult for her to suck, swallow, breathe that much food by bottle so she gets 2 bottles a day and rest by NG tube. Her ongoing fast breathing is likely due to her lungs not being fully expanded yet. She no longer needs photo therapy so she can be held and swaddled again. Shane is with Sheridan and Rochelle now and she loves listening to daddy's voice. Drs are concerned that she may need heart surgery if the PDA (a hole in the heart that typically closes after birth) doesn't close on its own. She may be looking at many more weeks in hospital if she needs heart surgery. We'll keep you all updated.

11/14-Good day today! Rochelle is off the photo therapy lights. She no longer needs IVs. The nurses were having difficulties starting new IVs, it took 10 tries on the last one. Poor baby. The amount of each feeding has increased to 45 ml per 3 hours. Normal babies eat about 30ml(1 oz)-60 ml (2 oz) every 3 hrs. She can now be clothed and swaddled and held. She loves being in her daddy's arms! Waiting results of lung x-rays. Will have echo cardiogram Monday to look at heart.

11/15-After losing weight the first few days, she has regained and now surpassed her birth weight. Drs are continuing to increase the amount of food in each feeding. She seems to be having some difficulties handling the increased volume so we'll discuss it with the doctors. As is common for babies with heart problems, she has started retaining fluid so she's on a diuretic. She has maintained her body temperature long enough to be moved from the incubator into a crib. There are some moments when she scares us and stops breathing briefly but we think it's related to increased volume of food. The rest of the time she is peaceful and able to sleep on her own or while held. The IVs have been removed and she only has 3 more days of antibiotics. She is doing amazingly well!

11/16- Rochelle had a good night. Her oxygen saturations levels are more stable today but now her heart rate increases at times. She's tolerating the increased food volume well.Tomorrow is the big day for the echo to see how her heart is doing. We are hoping since the doctor couldn't hear the murmur from the PDA that it's closed. She took 4ml by bottle today, which is the first time she showed any interest in it again, so that's great!

Well I know this is long, but this is the only way I am surviving, is writing everything down (literally taking my nursing notes each day, to try to keep up with all of this myself.) Thank you to all of our family and friends who have made the extra effort to stop by to support us and Rochelle, and those who have donated financially to help make ends meet. This is a trying time, but I know God is good and we will be able to take our precious angel home soon.