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

4 weeks and Second Blood Transfusion

I'm going to keep a tally of the treatments and tests Elsie receives while in the NICU.

Here they are so far:
Platelet transfusion: 1
Blood Transfusion: 2
Chest X Ray: (approximately) 7
Blood Cultures: 2
CBCs: 7 or so

She gets a chest x-ray and blood work done almost twice a week...so those are guesstimates.

Today Elsie is doing pretty good. Crazy to say that knowing they are going to start her IV, etc. for her second blood transfusion in the next half hour or so.

The CPAP is doing it's job. Her chest x-ray this morning showed that her lungs are more inflated. The fluid is moving. Her hematocrit is still low, and only going lower. Yesterday it was 27 today it is 25. So instead of putting off the inevitable they are going to start a transfusion this evening. Two weeks ago when she received her first transfusion the doctor told us preemies need transfusions every so often. They are unable to make red blood cells as quickly as they need them.

I say she is doing well because she has not had one apnea/brady episode that was not a result of her getting the CPAP off her nose. When you can calm her down and keep the CPAP on her, she does well.

Let's just talk about that for a minute. Imagine, if you can, my daughter in the 'downward facing dog' position in her isolette to get the CPAP off her nose. When that does not work she will sort of do a 'plank hold' pushing her head, and shoulders up to wiggle out of the apparatus. Other times she will simply push it out of her nose.

I hope at 12 or 16 she is just as strong willed (disciplined, but strong willed) and doing yoga in the dining room, or cheerleading, or volleyball, or golf....

Right now, she is keeping the nures on their toes.

Love Y'all,
Ellen

Still Standing...

I'm still standing. Barely, but still here. I am so tired, much like every other new mom is. People said the one good thing about having a baby in the NICU (if there is one) is getting to sleep. Um, not so much, peeps. This pumping every three hours is starting to wear me down. New moms, do you just get used to fatigue, or does your body eventually adjust to the lack of sleep?

Someone please tell me my body will eventually adjust to the lack of sleep. Please.

The other part of this that kind of makes me want to just cry is: this is not going to end anytime soon. With a new born you can work on a schedule to get them sleeping through the night by 9-12 weeks or so. It is only November. My child is probably not going to come home until January, and at that point, I will still need to feed every three hours. At least she will be home with us and I won't have to feel like I have to shower and put on mascara to go see her at the hospital. I can feed her when she needs it and not shower for days on end if that's what happens.

Okay enough about me. Y'all want to know about Elsie. So here is the latest. Elsie has a small amount of fluid in one of her lungs. The doctors do not think this is pneumonia, at least, not yet. So they are watching her closely and have increased the setting on her CPAP so it is blowing more pressure into her lungs, which will make them expand more, make it easier to breathe, and get the fluid out of there. They think the cause of the fluid is immaturity...she is only 32 weeks tomorrow. Her lungs are just not mature enough to inflate large enough to breathe and oxygenate her blood without help.

I held her today and she did not have any apnea or brady episodes while I was holding her. The nurse said she had been doing much better since they increased the setting on her CPAP earlier this morning. She continues to try and get the CPAP out of her nose. She hates it and screams when you put it back in. Girlfriend can wail.

Tomorrow they will do another chest x-ray to check for the fluid, and do more blood work to determine if there is some sort of infection. They warned me she may need a blood transfusion if her blood count remains low. But, if she sticks with the plan and does well on the higher CPAP setting, then a transfusion will probably not be needed.

Tomorrow is 4 weeks. Four weeks in the NICU. 28 days. Marinate on that, people.

In other news, I had my second check up yesterday and was told I could stop my blood pressure medicine. We also had a lovely 'baby celebration' at Ryan's work. There are 10 or so people who work in the group with Ryan (in addition to us) that have had babies in the last few months, or are expecting between now and January so it was a big celebration. They put baby pictures of all the Dads on a projector and everyone guessed who the baby was. Ryan's pic (thanks Katie and Fran!) is one of him all swaddled up in a white blanket. The Emcee said he looked like he was in a straight jacket. Ryan said "probably."

Love y'all,
Ellen

An Old Lady

My favorite Neonatologist is back on duty today. She explains things in a way I can easily understand, and uses the funniest phrases to describe the babies. Today, when discussing Elsie's Brady episodes she said "now Elsie is an old lady in here, she knows the rules. No misbehaving."

They put the sinus CPAP back on Elsie today. The nurse practitioner was quick to point out this is not a set back. Each Saturday they do blood work and a chest x-rays on the babies. Elsie's chest x-ray looks like the air sacs in her lungs are not opening. On the x-ray her lungs look white-ish, instead of black (air is black on an x-ray, did you know that?). So the CPAP will provide more pressure and keep her lungs inflated so she is able to grow and mature rather than use all of her energy breathing. The NP also said it is normal for babies to have a CPAP until 1200 or 1300 grams. Elsie is 1010.

She is digesting breastmilk with the added calories well, so they are going to continue to add them. She is up to 20 CCs of breast milk every three hours.

Her hematocrit was a little low today. Not low enough to do a transfusion, and they don't want to stop feeding her (they would have to stop feeding her to transfuse), so they are putting her on iron.

Hopefully the combination of the CPAP, the iron, and the caffine she was already on will help her breathe easier and keep her oxygenation saturation numbers up.

The doctor said the episodes could be a combination of reflux and the maturity of her brain. She says if we can get Elsie to grow, then she should grow out of both the reflux and the bradys. We shall see.

Love Y'all,
Ellen

Another Day

Elsie seems like she is over her rough patch from earlier in the week. Thanks to everyone for your kind words, thoughts and prayers.

Yesterday was better. I could tell that Elsie was feeling better after getting a full 24 hours of her antibiotics. She was active in her little box. She is strong. I swear sometimes she is going to push her upper half of her body off of the little bed in her isolette. She lifts her head, and can push her butt up in the air. It is wild to me that a 31 week old baby who is less than 2.5 lbs can be so active. I guess from all the parenting books I read during my pregnancy I wasn't expecting much movement until she was able to hold her head up around 3-4 months of life?

Today was a wonderful afternoon with my little girl. She is now 2 lbs 4 oz, and they are adding calories to her breast milk so she will gain more weight. They do this with a powder supplement that is mixed with my milk. She will get 22 calories. I joked with my mother in law that this was probably less calories than are in a stick of gum. This is a normal procedure for preemies that they want to gain weight.

Her white blood cell count is looking good, and there is no sign of infection in her blood culture, so antibiotics have been stopped. Awesome!

While I was holding her she just slept peacefully and did not have one Brady episode. One of the nurses joked that she was behaving for me after acting up the last few days. It was wonderful to just have her sleep on my chest and me not have to stimulate her. I know this is not the norm; but what a gift after the last few days we've had!

In other news, Ryan took me for my first night out last night! We went to a fundraiser for the Leukemia and Lymphoma Society at a local wine bar. It was so nice to get out of the house, dress for an occasion, and talk to people about something other than blood counts and poopy diapers. I started out being depressed about my wardrobe options (you moms know post pregnancy bodies can be hard to dress) but left feeling so glad I went. Everyone was so glad I got to come and said very nice things about how I looked having given birth three weeks ago.

At the fundraiser we met the CEO of the hospital Elsie is in. Ryan's boss started talking to him, and when he told her what he did for a living, she called us over and introduced us. He was so nice. Ryan and I told him how happy we have been with the level of care Elsie has received; and how informative and helpful the nursing staff is. Just goes to show you never know who you are going to meet!

Love y'all,

Ellen

How Quickly Things Change....

I feel like my life has turned into a really long field trip to Six Flags or something; only my mother didn't sign my consent form that it was okay for me to go. We are on a rollercoaster and today it feels like there is no end in sight.
Sometimes it is so intense in the NICU I feel like I am in the ninth grade again going upside down on that awful spaceship ride, with Bran sitting beside me telling me to think about something else. I hate rides that go upside down, but the other mat maids talked me into it; and made me sing a song to take my mind off of the vomit in my throat. It is all I can do to not just run screaming out of the hospital. Then, other days it is so quiet, I feel like I should get the little asian ladies to give me a mani and pedi right there in the NICU.
I know what you're thinking. I haven't gone off the edge people. I'm just reflecting on how quickly everything has changed. Ryan would say this is way too dramatic and I need to just suck it up. He's right, and I've done just that for three weeks...and right now just needed to put this out there. Somedays are not fun. They told us that from the beginning. In general, the NICU is not exactly a fun place. No matter how sweet, caring, or funny the nurses try to make it.

So what happened? First, as the nurse practitioner told me on the phone this morning: "Elsie is okay." Yesterday was a big day. Elsie moved up to half an ounce (HALF AN OUNCE PEOPLE!) of milk. They also took out her "pic line." New vocabulary word for you, folks. As the consent form so aptly explained, a pic line is used for long term IV therapy. Essentially it is an IV that they can leave in for any amount of time, as long as it does not become compromised in some way. This is a big deal because Elsie received a pic line on day eight of her life to supplement the breast milk with essential vitamins, lipids, and other IV liquids. Now that she has increased to half and ounce of milk she will receive all of her sustenance from the breast milk. How awesome is that? Definitely a big deal, and the nurse practitioner was almost excited as I was about it.
Then she had several BRADYs where she would start back breathing after I stimulated her, but then she would not continue breathing on her own. So much so, that I only got to hold her for 45 minutes until the nurse decided she probably needed to go back into her isolette. Sad.
Today, I received a phone call at 6:45 am that Elsie needed to start antibiotics. Basically, she had a really "ugly episode" last night where she would not continue to breathing on her own and they had to "bag her." So this means that they had to breathe for her with the little mask/bag until she came back and would breathe on her own.
According to the nurse practitioner, this could have been due to a reflux that caused her to aspirate. They did an X-ray on her lungs to make sure they were okay, and they are. Another culprit could be her belly. Her belly has always been a little more rounded than they would like. But she continues to digest her food well, is stooling, her stomach is soft, and sounds great. So no worries there; except, since her stomach is a little large then it could be pushing up on her lungs and making it hard for her to breathe.
Another cause could be an infection. They are always worried about infections in babys this small. So to be safe they did blood work and her blood counts were low (for her). To be proactive in the event she may have an infection they are giving her antibiotics for the next 48 hours.
THEN while I was doing my skin to skin today she had another really bad episode. So much so that they had to suction her mouth so her oxygenation levels would come back up, and get her to sleep on her side instead of her stomach while she was laying on me. I cannot explain how it feels to hold your child and see them stop breathing, and not be able to get them to start again.
So she is not having a good day today. If she continues with these episodes they will want to put a tube back in her throat to help her breathe. As my always positive thinking mother in law said "well, and that's okay, at least then you'll know she is breathing." Truer words could not have been spoken and that was exactly what I needed to hear.
It's okay to have good days and bad days. She's still only 31 weeks gestational age. Two pounds, two ounces. That is still extremely tiny and really premature. It just hearts my heart to think about my daughter in the NICU without me, and not being able to breathe so much that they have to do it for her.
So to cheer myself up I took Rudy for a walk and watched the kiddies ride their bikes home from the elementary school down the street. How sweet is that? Somedays I swear we live in Mayberry. Right now I can hear someone's child practicing the clarinet. They need the practice, it sounds like. One day Elsie will ride her pink Barbie bike to school, and play golf with Ryan. Then beg me for a mani/pedi of her own.
Let me also be clear: Elsie is doing okay. She is doing better than other babies in the NICU. I understand it could be a lot worse. God is awesome and has blessed us thus far. We thank you for all of your thoughts and prayers.
It's just that today was not good, and I needed to vent. Rudy can only take so much...

Love y'all,
Ellen

2 Pounds!

Yesterday was a big day! Elsie officially weighed in at 2 lbs. When I visited her this morning she was up to 2 lbs 1 oz, and they have increased her feedings to 11 CCs of breast milk every three hours.

We went by the hospital before dropping my Dad off at the airport yesterday morning, and when the nurse told us her weight was 2 lbs we all let out a cheer. She said "did you ever think you would be so excited about two pounds?" Ryan replied "YES! Yes we are so excited." The nurse from a 'room' across the aisle had to come ask us to use our inside voices. She was taking care of twin girls that seem to be struggling right now and need their beauty rest. Minimum stimulation signs are posted on the curtains around their isolettes.

So now we are officially on our own. I was not looking forward to walking into the NICU by myself for the first time yesterday afternoon when I went back to do skin to skin. The nurse came over to let me know she would be right with me, and asked if we got my Dad off safely. "Yes we did, thank you" I replied. Another nurse came over and said "oh he left? He's been here since your baby was born, are you okay?" They are so sweet. Not only are they truely concerned about my child, but I think I will be friends with some of them by the time Elsie comes home. I was not expecting that but am so grateful.

Rudy misses his Grandpa. He looked at the door of our guest room (soon to be nursery) this morning and looked at me like "where is he mom?" I had to remind him that Grandpa went home and he is not here any more. Poor Rudy. To keep his spirits up I am about to take him on a long walk...

Okay so the pics: the first is Elsie at 2 lbs. You can tell a difference in her appearance with the weight on her. She looks more like a baby now. A pretty baby...

Second is my Dad looking at his granddaughter through her isolette and telling her bye-bye.

Third, is Ryan holding Elsie's hand. Girlfriend has a good grip. Ryan jokes that this will be good for gripping a driver later on in life. This is the story of my life people, Ryan is always on the golf course. Before we know it he can take his daughter with him; after I get her the cutie patootie golf clothes!

Thanks to everyone for their kind words, thoughts, and prayers thus far. Keep them coming. We appreciate them so much.

Love Y'all,

Ellen