Thursday, July 25, 2013

Moving Forward

* Emma has been breathing much better since taking the diuretics, which just flushed all of the fluid from her body. She is now on 1 liter of oxygen, and breathing 21%-25%. She will continue to get one dose daily of the diuretic.

* Emma had her swallow study and upper gastrointestinal study done on Tuesday, and everything came back normal! She was very close to aspirating the breast milk/formula during the swallow study, so that is something we will have to continue to monitor until she has developed more. The good news, is that she started bottle feeding again! She still has to learn the suck-swallow-breathe rhythm, but she is already pacing herself rather than me having to lean the bottle away to remind her to breathe. That is huge progress!

* They have not repeated the echo cardiogram to see if the hole in the top septum of her heart has closed yet.

* Emma is continuing to improve during her daily occupational therapy sessions. There is a wide range of "normal" muscle tone for babies Emma's age and weight, and Emma is on the lower end of that range. Because of this, she will need continued physical therapy after we come home.

At this point, the only thing keeping Emma in the NICU is learning how to feed from a bottle, and weaning from the oxygen. Come on Emma Grace, you can do it!

There are very few moms that can understand the heartache of carrying a baby in your body then being separated from them after birth for an extended amount of time. This has been a very difficult journey for Justin and I, and although we rely on God for our strength, that doesn't take away the pain of not having Emma at home with us. We are so thankful for all of the prayers, and ask that you continue to pray for Emma and our family.

Wednesday, July 17, 2013

1 Month Old

Emma is 1 month old today! It is hard to believe so much time has passed, but she has come so far! We can't wait for the day when we get to bring her home to join our family!

* Emma is done with her antibiotics, her IV is out, and her group B strep is gone! She seems to be feeling much better, but we are still not sure why her breathing is progressing so slowly. She is still on 3 liters of oxygen and receiving 25%-30% of air. There are quite a few theories as to why she is still needing oxygen support. She is receiving a diaretic to help flush out any fluid that may be around her lungs and heart. Emma has an opening in the wall between the top 2 chambers of her heart, which is normal for preemies, but it should be closing soon. If there is fluid around her heart it could be slowing down the closing process, so we are hoping the diaretic will help that. Another reason for her needing oxygen support could be that her reflux has forced some spit up into her lungs. When her oxygen support is lower, we will have a "swallow study" done and they will monitor where the formula goes into her belly and make sure everything is going to the right place.

* Emma was moved into an even bigger crib today so that she can have a mobile above her. The nurse said during her bath this morning she seemed bored so that is a great sign that she is maturing! The occupational therapist said that her muscle tone has also improved quite a bit, which is impressive since she has been so sick the past 2 weeks. Way to go, Emma!

* Emma is over 7 lbs now, and she has grown a few inches too! She is currently around the 50th percentile.

Sleeping beauty, one month old!

New crib!

Emma's battle scars: The two scars on her back are from the shunts that were put in to drain the fluid while she was still in my belly.



Tuesday, July 9, 2013

No Meningitis!

Emma Grace does NOT have meningitis! PRAISE GOD!

When I was at the hospital today Emma was awake and very alert! She has been sleepy the last week since she has been sick so it was wonderful to see her beautiful eyes again! She lost a little weight while she was sick so the doctor increased her feedings to a little over 2 ounces every 3 hours so she should start gaining weight again quickly! Hopefully in the next few days she will continue improving and they can start weaning down her oxygen again.

Thank you, everyone, from the bottom of our hearts for praying for Emma Grace and our family! God is so good!

Sunday, July 7, 2013

Fighter

It was confirmed yesterday that Emma does have Group B Strep, so she started receiving penicillin to treat it. She is already showing improvement, and the doctor was even able to turn down her oxygen support to 3 liters. This afternoon, the doctor performed the spinal tap procedure, and Emma did great during that. They gave her something called "sweeties" to make her comfortable so she wouldn't feel pain. When the doctor drew her spinal fluid out, he said it looked very clear. Usually if it has bacteria then it would be cloudy, so we have hope! We should get preliminary results back late tonight or tomorrow morning. These results will just give her white blood cell count, which are the cells that fight infections, so if it is in a normal range it should mean there is no meningitis. Justin and I got to hold Emma and love on her after the spinal tap, and she seemed very comfortable! Nothing phases this little girl, she is so strong!

If everything goes well from this point and Emma heals from her infection, the main thing keeping her in the NICU is learning how to feed from a bottle. Preemies are not physically able to grasp the rhythm of suck, swallow, breathe, so when we did try the bottle (we had to stop because her oxygen support went too high) Emma would just suck & swallow several times, then try to catch up on her breathing. I have no doubt she will be able to conquer the bottle quickly!

Thank you for your continued prayers. Even days when it is hard to find strength, I know God will provide it because all of you are praying for our family, and our precious little girl.

Friday, July 5, 2013

Prayers Needed

Prayer Warriors,
The past few days Emma's condition has been going downhill. She is needing even more oxygen support and her breathing and heart rate are dropping several times a day. The doctors believe this is due to an infection, so they drew blood and urine cultures yesterday to start testing. Her blood cultures grew bacteria within just 12 hours, confirming an infection, and the doctors believe it could be group B strep. We should have the results by Saturday. She has been on antibiotics since Thursday and is already showing improvement, but if it is group B strep, it could potentially be very dangerous, even fatal. If the bacteria is found in her spinal fluid, that means she has meningitis, and that is the most dangerous part. Nothing is certain right now, we are still waiting on the results, but please keep praying for our sweet Emma! Group B strep and meningitis can both lead to severe long term developmental disorders. Since she is showing improvement, it gives us hope that it is not serious, but there is no guarantee. Please pray for Emma, Justin and I. I am finding it hard to find strength right now. God has been so merciful throughout this journey, and we are praying this is just another little bump in the road. Thank you!

Monday, July 1, 2013

Still Cruising Along!

* Emma's feedings have increased everyday and she is now at the full amount of what babies her age and weight would eat! We try bottle feeding twice a day and last night she drank almost a full bottle! She is digesting everything and the fluid has not re-accumulated, so that is a great sign that the cause of her hydrops will not be lymphatic, which is very dangerous. We will probably never know the cause, but if the fluid never comes back that is ok! There is still a small chance it could come back and end up being lymphatic, but the chances at this point are pretty small. Praise God!!!!!

* Unfortunately, Emma was having trouble breathing the last few days so her nasal cannula is back in. Her stomach muscles are a little underdeveloped from all the fluid that was in there so the oxygen support really helps her be able to drink from the bottle. This is just a minor set back, and we are sure once she conquers the bottle she will be able to wean from the cannula and breathe on her own again.

* Emma is now in a big girl crib! She has maintained a normal temperature so she doesn't have to stay in her glass box anymore! It is so wonderful to see her in a normal bed!

That's about it for now! Emma has made HUGE progress in such a short amount of time! We are so proud of her and all that she has overcome! She is such a strong little girl already, we just know that God has BIG plans for her! Thank you for continuing to praying with us!

Emma in her big girl crib!
 
 Showing a little personality
 
 Daddy feeding Emma a bottle
 
 Snuggle time with Mommy!