Update from the NICU-Day 51

Hey everyone~

Quick update on Scarlette, she did very well yesterday and last night. They took abdominal x-rays which showed no blockage or twisting of her intestines so that was very good news. Her breathing is still very accelerated so for now they will only tube feed her, no feeding by mouth yet. They are still waiting on cultures to make sure she doesn't have a urinary tract infection or the flu. They said its possible that she aspirated some milk into her lungs and that could have caused a mild virus or pneumonia. As long as they don't find any of these things she could be home as soon as tomorrow or Sunday. She's very happy despite everything going on around her and has been awake, alert and calm for most of the time that I have been there. My mom flew out yesterday so that has been a very big help. Prayers continue to be appreciated and we will let you all know if anything changes!

Love,
the Skrove's

Scarlette WAS home....

Well, tonight I was planning on posting a blog about Scarlette coming home yesterday, but instead I have to post about how she came home and was readmitted to the NICU. Yesterday was a great day, we went to the NICU around 10 a.m. and got Scarlette all packed up in her carseat and filled out a ton of paperwork. By 1 p.m. we had her in the car and were on our way home. She was asleep when we got home, and slept for about 5 hours which is a lot for her but we attributed it to the big day she had. She wasn't doing very well with her feeds, but again, we were trying to give her some time to adjust. During the night she woke up twice, but wasn't interested in her bottle at all. Then this morning she was breathing very heavily and her respiratory rate was significantly increased so we upped the flow of her oxygen. This did seem to help. She still wasn't interested in eating and I was starting to monitor her closely because I was starting to worry. When I unswaddled her for her 3 p.m. diaper change her hands were so pale white they almost looked gray. I immediately called the NICU and they said to monitor her for an hour and to go to the ER if her breathing didn't slow down and she didn't "pink up". Well she started to look better so I decided to go ahead with her feed, but when I checked her feeding tube she had a greenish liquid come out and they had told me previously that is a sign of infection so Mitch came home from work and we went straight to the ER.

After consulting with Georgetown the doctor at the ER thought it was best that she be re-admitted for observation. The transport team from Georgetown arrived about an hour later and took Scarlette and I in the ambulance, with lights and sirens. That was a new experience!

Scarlette is now back in the NICU and they did an abdominal x-ray which showed that her intestines are creeping up into the hole that her diaphragmatic hernia caused. Because of this, they are going to consult with the pediatric surgeon tomorrow and may end up doing the diaphragmatic hernia surgery in the next couple of days. If they decide not to do the surgery Scarlette should be back home Friday or Saturday. We will post again as soon as we know anything. Please pray for her, she really needs it now.

Love, The Skrove's

Coming home next week!

Well, we wanted to make sure it was official before we posted another blog, and we don't know the exact date yet, but Scarlette will be officially discharged next week! I cannot believe it, the time has just flown by! But we are over the moon, we cannot wait until she is home with us. Yesterday we attended a baby cpr training class, and today is her apnea monitor training (the monitor that alerts us if her saturation, heart rate or respiratory rate is not where it should be). Next Monday hopefully all of her oxygen equipment will be arriving at the house. I will practice putting in her NG tube again tomorrow, and this weekend we are spending the night in the hospital and Scarlette gets to "room-in" with us so we can practice taking care of everything ourselves. This way, if we have questions, a nurse is still assigned to us, but we are learning to do everything for her without their aid. Then hopefully, she will be discharged by Wednesday. Mitch will be taking leave from Halloween until November 6, and my mom and my Grandma(!!) will be coming from November 6 to November 10 so I can adjust to having a new baby around the clock! Thank you all for participating in this journey with us, we are so blessed and your prayers have been so encouraging and answered abundantly. Scarlette still has a long way to go, and many more challenges to face, but I am confident that coming home is a definitive turning point for her!

Love,
Nicole

Hello all,

These probably won't be so frequent as time goes on, but we got a bit of good news today and I just thought that I would share! We are now officially in the discharge process! They are getting ready to send Miss Scarlette out into the world! First, Mitch and I must prove our worthiness: we have CPR training on Thursday, monitor and oxygen equipment training and I have to demonstrate my ability to insert her NG tube. Who knew having a baby would be so much schooling? But it is definitely worth it!

Scarlette went down to 0.5 liters of flow today, but is now at 100% oxygen, only because when they send us home there is no regulator on the O2 machine so they only have 100% available and they want her to be used to it. She does not need that much, but it is all that is available. She is doing really well on it so far, and had a great physical therapy and speech therapy session. Our speech therapist, Shannan is great! And she has been monitoring and teaching us how to feed Scarlette with the special bottle since she was born. Jen is our physical/occupational therapist and she works with her 3 times a week just to make sure she is progressing physically and developmentally. Jen said today's session was the best Scarlette has ever had! This is great news! Keep praying, Scarlette may be home with us as soon as late next week! She will be 7 weeks old, and I will be very happy to hit her 2 month mark here at home!

Finally starting our Blog! Day 40 in the NICU

Tomorrow starts our 40th day in the NICU and I am just now starting this blog. I know, I know, bad mommy! Well, I have had more important things on my mind! Scarlette was dropped down from 2 liters of hi flow oxygen to 1 liter on Thursday. This is basically pressure that opens up her impacted lung and lets in the room air that she is already breathing unassisted. Unfortunately this caused her to become very tired and she refused to take much of her bottle feedings. We gave her a day to adjust, but Friday evening there had been no progression in her breathing and she was still tiring very easily so Saturday morning she was bumped back up to 1.5 liters. This must have been the magic number because she took half a bottle from me at the 12 p.m. feed and 3/4 of her bottle from Mitch at the 6 p.m. feed. For her this is very, very good!

On Sunday they decided that Scarlette can attempt to bottle feed whenever she is awake now instead of only every other feed. This is definite progress! I also learned how to insert her NG tube, which is how she gets the rest of her milk when she is too tired to take it by bottle. They originally wanted her to take all feeds by mouth before sending her home but because her lung will take a long time to grow and she seems to be progressing, but at a slow rate they will allow us to take her home with the tube provided that we try all feedings by mouth and then use the tube. This means she should be able to come home in the next few weeks! Praise God! Hopefully we will get her eating in no time!

On Wednesday we will meet with Dr. Baker, the plastic surgeon who will most likely be repairing Scarlette's cleft palate. We should find out approximately when he will do it during this consult. We cannot wait!

Our little princess is so cute and so full of energy now! She stays awake much longer and is very feisty! Also, many of the nurses have commented how she has more hair than any baby they have ever seen and everyone gets a kick out of the fact that it is always sticking straight up as you can see in the first picture! I will post more soon, thanks to all who are praying and all who are keeping up with us, hopefully this blog will make it much easier!