Thanks and Giving

Elsie continues to do well. The NICU got a new set of twins, and moved Elsie to a little room so she could have some privacy. "Our little princess" one of the nurses said. Yes, she is; and at 43 days old and currently the oldest baby and smallest (weight) in the NICU, we deserve some peace and quiet. Right?

She is now 2 lbs 14 oz and did not have any episodes in the last 24 hours. This time she is taking to the cannula well. After not having milk for 24 hours after the blood transfusion they have gotten back to full feedings; then increased her to 26 CCs with 24 calories. If this continues we may try and nurse next week. "Just to see what she does."

My family arrived in The Woodlands very early this morning to celebrate Thanksgiving. Thanksgiving is my favorite holiday. I LOVE to eat; and a holiday that brings your family and friends togther for the best meal of the year is hard to beat in my book.

This year we have many things to be thankful for. Most of all I am thankful to our family/families for providing such a strong support system at this time. Even if it is from afar, I am proud of the strength and solidarity we have shown. Ryan and I could not have done this without y'all. Know that we are a product of your upbringing, and you did well.

Secondly, the doctors, nurses, and the entire staff at the hospital. They are truely my daughter's guardian angels. Everyday I am thankful that those people made the decision to take care of babies. Believe me when I say it is not a job anyone could do. They are amazing and I will be forever grateful to them. They are not only nurses and doctors, but have become an extension of our family. That doesn't happen everywhere and we recognize that.

Thirdly, I am exceptionally thankful for you, Internet friends. Y'all aren't just Internet friends. Y'all are Conway friends from Woodland Heights and Second Baptist that have been there from the beginning with Ryan and I. You are girls that sat on a pieces of paper with me and thousands of others on one of the hottest days in Bryant Denny Stadium, and later pledged to support me forever. You are absolutely supporting me in my hour of need and I cannot tell you how awesome that is. You may also be a part of a group of friends that not everyone had the privilege of making in college. Ours was a unique experience that created a bond that has lasted almost 10 years. You are the people we will tell Elsie about years from now when we try and talk her out of going to UT. Even more amazing, you may be the parents of one of those kids that we went to college with. Or y'all are "friends of the heart" reading this in Birmingham, where I will always call home. To the friends we have picked up along the way...know that this is just how it goes with the Baileys. Never exactly as planned, and always the hard way, but we do try and have fun doing it.

We are thankful for each of you. Please continue to pray for strength. Clearly, it is working. You don't know what it means that you log on to your computer, and check this blog to see how our daughter is doing. That is amazing, really.

Happy Thanksgiving, and Love y'all!
Ellen

Off the CPAP...

Elsie is off the CPAP and on a Cannula. Now the problem is her nasal passages are so swollen from the prongs and air...she is having a hard time breathing. To treat this, the nurses are suctioning her out when she shows signs of distress and putting cold saline drops down her nose every three hours. I felt awful for her listening to her tiny little body try and breathe and not be able to do so easily. So sad.

Her hematocrit levels were low this morning so she is getting another blood transfusion. This is number three for those of you counting with me. The doctor called her a blood transfusion junkie. Sometimes, doctor humor is not really funny. Seriously though, she has been getting one about every 10 days. We are hoping now that she is bigger ( 2 lbs 13 oz!) the transfusions will not be needed as frequently in the future.

We shall see.

Love Y'all,
Ellen

Put Some Clothes on that Child!

Elsie is now wearing clothes in her incubator. The onesie is the NICUs, it is a preemie size, and you cannot really tell in this picture...but it is huge on her. Isn't she cutie patootie? The purpose of the onesie is for her to learn to regulate her body temperature. Slowly they will start to turn down the temp in her little house, and assess her body temperature to make sure she can hold a good 98.6 degrees.

She is now 2 lbs 12 oz, which is 1260 grams. She only needs to gain 40 more grams to get the CPAP off. Hopefully this week she will gain the 40 grams needed and they can put a cannula in. According to the Nurse Practitioner micro-preemies (Elsie is a micro-preemie, meaning she weighed less that 1 lbs 11 oz) that have a CPAP until 1300 grams do better in the long run. So even though she is fighting it now, we hope that keeping the CPAP on until she is 1300 grams will allow her body to grow and her lungs mature enough that she does well for the next phase of treatment.

Next on the treatment plan is learning to take all foods by mouth. Once she has her cannula in, and the CPAP off, they will have an occupational therapist work with us on breastfeeding as well as bottle feeding. The OT can teach sucking, swallowing, etc. The NICU has an excellent lactation consultant that is rumored to be able to get a baby to nurse off the side of a wall. Let's hope it doesn't come to that...

Love Y'all,

Ellen

Daddy's Little Girl

Ryan held Elsie today! They both did very well. He seemed to be a little flustered while we got her settled on him (she gets PISSED when you move her, and have to reposition the CPAP), but she quickly calmed down and went right to sleep. I sat in a chair beside them and took this picture; it will probably be one of my favorites for the rest of our lives.

She is still 2 lbs 11 oz and doing well with the CPAP...but takes every opportunity to get the prongs out of her nose. Bless her heart.

Love y'all,

Ellen

Baby Steps

Slowly, I feel like we are starting to see progress. Elsie continues to gain weight. Last night she weighed 2 lbs 10 oz. Feedings are being slowly increased by one CC at a time. The last two days she has handled the increase well. One CC may not sound like much, but when you are only 2 lbs 10 oz....every CC counts! They are fortifying my breast milk with 24 calories to help her gain weight. Right now she is around 1170 grams. To begin weaning her off the CPAP she needs to be between 1250-1300 grams. Hopefully she will continue to gain at this rate, because people she HATES that CPAP. Have we talked about that? Yes, you say? Well let me tell you what my 32 week 6 day, 2 lbs 10 oz little girl did today.

Today it took us 45 minutes to get her settled on my chest for her 2:00 feeding she was fighting us so hard to NOT put the CPAP in her nose. First, I should say that the nurses are fantastic at somehow plugging and unplugging all the wires so I can hold Elsie, and at the same time keep an eye on her vital signs to be sure she is not in any sort of distress. They are amazing. I would lose my mind from all of the alarms going off.

So the nurse gets her out of her little house, and hands her to me. I get her on my chest and then we get her positioned to get the CPAP back on her nose. Elsie is not having it. She screams (a little mouse-y, high pitched scream) picks up the upper half of her body and moves her head to get away from the prongs that go into her nose. When we finally get them in her nose, and the tubes attached so the air is actually going into her lungs, she pushes the tubes so everything comes out of her nose. After much fighting, we get the tubes back on, and the prongs are in her nose. Success!

Then, I say to the nurse: "I don't know where her feeding tube is. Wait, it doesn't look like it is in her mouth." The nurse says in a disbelieving voice: "oh my goodness." So now that we have her calmed down and the CPAP successfully in her nose....the feeding tube is on the floor. Elsie pulled it out of her throat in all of the movement to get the CPAP back on. Just so you know, the feeding tube is taped to her face. It had to hurt to get it out of her throat and then completely off her face and onto the floor. It is well past the 2:00 feeding time, and we are only half way there.

So then the sweet nurse begins feeding a new tube down her throat. Elsie begins screaming again and fighting us to get the tube down her throat. She is arching her back, using her hands, anything to get away from the CPAP and the feeding tube. The taping on her face is re done and a new tube is fed down her throat. CPAP is on with me holding her head so she cannot get away from it.

It 45 minutes past feeding time, and her syringe is just now getting started.

I swear she knows that when you move her that it is an opportunity to get away from the CPAP and she seizes the moment. She gets really really mad when you are trying to do anything near her nose, or face. She just hates it all.

I told Elsie that if she cooperated and kept the feeding tube in, she could eat. Then she would gain weight and get the CPAP off. Let's hope she listens to her mama.

Love y'all,
Ellen

A Good Week

This week was a pretty good week for Elsie. After losing a little bit of weight after her blood transfusion, she is back up to 2 lbs 8 oz. Her brain scan was normal!

She continues to battle the CPAP, but is doing well with it. She only had one brady in the last 24 hours that the nurses charted (meaning, they had to stimulate her, or it was a significant drop in heart rate). The others she corrected herself! This is good. We want her to correct herself.

The past several days Elsie has not had any episodes while eating when I am holding her. Due to reflux, eating could sometimes be frustrating for her and for me. Her because she is refluxing, and me because she holds her breath so I was frequently stimulating her over the course of the hour.

I don't want to jinx us, but it feels like this may be progress. The plan is to increase feedings (currently getting 22 CCs fortified with 24 calories) so she gains some weight and keep the CPAP on her. According to the doctors it is normal for a preemie to have a CPAP at 34 weeks. Since Elsie is so small (still smaller than the growth curve, and every other baby in the NICU) the doctors are not worried about her still having a CPAP at almost 32 weeks.

Now for the pictures. I tried to get some of her getting the CPAP out of her nose. The nurse made a great little 'nest' in her isolette and she is snuggled in there in this picture, so no yoga moves...but you can see her trying to get it out.

She is looking bigger, right? It's not just me?

Love Y'all,

Ellen

I Saw Her Brain!

On an ultrasound. Seriously one of the coolest things EVER. Standard NICU procedure is to get a baby a brain scan at 7 days of life and again at 30 days. Elsie's was normal at 7 days. Today they did the 30 day scan. No official results yet, should have those tomorrow sometime.

Today while I was holding her (as she was eating) the ultrasound tech came down to do the scan. Elsie gets pretty pissed when you put her back in her little box after I hold her, so instead of putting her back, the nurse and I decided it may be easier for the tech to scan her while I was holding her. She was perfect.

So here I am, holding her, and they just put the goo on the wand and scanned her brain. I got to see her brain on the ultrasound screen. Of course the tech will not tell you anything, it all has to come from the official report by the radiologist.

She did well with the blood transfusion last night. I took my camera to take pics today, but must admit she looks pitiful with the IV for blood and another for the fluids. They should take the IV out tonight, and I can take pretty pics tomorrow. Pretty as a CPAP and Isolette can get, at least.

They resumed feeding her at 2:00 this afternoon. If she digests everything well, they should be back up to 22 CCs by 2:00 AM tomorrow morning.

She is officially 2 lb 8 oz. That is 2 and a half pounds people! Soon she will have gained an entire pound since birth at 1 lb 9 oz. Way to go Elsie Lou!

Love Y'all,
Ellen