Expanding Our Vocabulary

First things first, Elsie got a good report yesterday. She is now 1 lb 14 oz, and is up to 4 CCs of breast milk every three hours. Each time she is increased to 4 CCs, she seems to have some sort of set back. This happened Tuesday when she needed a blood transfusion. So when we did not receive a phone call early this morning, I was relieved. Today the nurse practitioner said they were watching her; as her stomach seemed a little distended/round this morning. She is stooling, and still eating well. To be on the safe side they did take blood work to be sure there was no infection. She is having a few episodes where she forgets to breathe, but fixes most of them on her own. Yesterday, she only had three in a 12 hour period that the nurses had to stimulate her to get her heart rate back up.



As I was sitting there today, watching her breathe, I couldn't help but think about all the new vocabulary terms we have learned and come to use in our conversations. So here are a few:



BRADY (or 'A's and 'B's) - this is what the episodes are called. Apnea and Bradycardia is when she stops breathing and her heart rate drops. It is wild to feel her do this while she is laying on my chest. I wait a few seconds and if she doesn't start to come back up then I rub her back or move her head slightly. This usually stimulates her enough so she'll take a deep breath and her heart rate comes up again.



GROCERIES - this is what the nurses call her breast milk. If I am sitting with her, the nurse will say "okay Mrs. Bailey, I've got to go get her groceries and then I'll feed her; be right back." This is hilarious to me. I thought maybe it was just this one particularly funny nurse, but nope they all say it.



CONTAINMENT - this is what the nurses call me 'holding' her in her isolette. I firmly place one palm on her head and the other on her bottom. Aside from bonding with your baby, the nurses say this reminds the baby of being in the womb. The pressure on their head and lower half makes them feel safe and warm, similar to how they felt in utero.



SKIN TO SKIN - or Kangaroo Care; this is the term used when I am actually holding her on my chest, outside her isolette. The nurses will ask, "are you ready to do skin-to-skin now?" This seems like a crazy question (of course! what mother is NOT ready to hold her preemie?), but you have to sit there for at least an hour. I usually hold her for an hour and a half to two hours. So I have to make sure I've gone to the ladies room and have some water before I get started.



DESTAT - when Elsie's heart rate, respiratory, or oxygenation rates drop below a certain number. Each baby's numbers could be different based on their gestational age. Think of Dr. Arizona on Grey's saying she's "DESTATing." And then giving her a little rub on the back to get her heart rate to come back up.



So now, when I use these terms on the blog you'll know what I'm talking about!



Totally switching directions here, we got a call from Fancy today about a family friend today. We are praying for strength and wisdom. We appreciate all the prayers from Second Baptist and are happy to return the prayers for another in need.



Love Y'all,


Ellen

Thirty Weeks/Two Weeks Old

Today Elsie is two weeks old, and exactly thirty weeks gestational age. She tolerated the transfusion well yesterday and they have started her back on breast milk at two CCs every three hours.

I got to hold her again today, and got Daddy to get a better pic of the isolette and me sitting beside it so y'all can get a better idea of what it is like. Once they get her settled on my chest I have to hold her for at least an hour. Not only is it totally awesome to hold my daughter, but the NICU has the most comfortable chairs! I need to find out where they get them, and determine if we can have one for the nursery at home. I love sitting in them.

There are now four sets of twins in the NICU. The newest set arrived yesterday afternoon, and were born at 26 weeks. Both girls are bigger than Elsie. We giggled when the nurses asked their parents what their names were, and they said "we'll have them by the end of the day, we are still discussing." The nurses laughed and said "no pressure, we'll just call them Baby A and Baby B until you've decided." Their Dad proudly announced their names this afternoon while we were there for our evening visit.

Elsie's "roomie" is going home tomorrow. We are so happy for the baby and her family. They have been so sweet every time we've seen them. It is inspiring to see parents that have worked hard with the NICU nurses to get their child ready to go home; actually get to take their little girl home with them.

Love Y'all,

Ellen

A Few Firsts

Since the last post Elsie has had a few firsts. First, Ryan changed his first diaper on Sunday night. The nurse was doing her regular assessment (which includes changing the diaper, taking a temp, checking blood sugar, and her blood pressure). The nurse asked if I had changed Elsie's diaper (YES! I've changed three now!), and I of course told her I had but Ryan had not. So she talked him through how to change a diaper. He concentrated very intently, stuck his tongue out, and got through it successfully. Daddy and I clapped when he finished. Way to go Ryan! A great milestone.

Secondly, I got to hold Elsie yesterday. When babies are as tiny as she is the NICU practices 'kangaroo care' meaning, you hold the baby skin to skin to keep them warm. We had to tell them in advance so they could get all the IVs and cords on the right side of her isolette, so I could hold her in the chair beside it. One of our favorite nurses had a very busy morning yesterday and made sure she had the IVs placed correctly before we got there at 11:00. We were so appreciative. At any rate, they put a little hat on Elsie, and slid her up under my shirt so her head was right under my chin. She snuggled in and slept for an hour and half and barely made a peep. She fussed when they got her out of the isolette, but the minute she got on my chest and snuggled in she loved it. So did I! Another great milestone for The Baileys. Ryan will be the next to hold her.

Thirdly, we got a call early this morning from the NICU that Elsie needed a blood transfusion. Yesterday evening when they pulled her residual (what is left in her stomach) before they fed her again, the residual was a yellowish color. So they took blood work to make sure there was no infection and did an ultrasound of her abdomen to make sure there was nothing wrong. Blood work came back negative for infection, but it showed that her Hematocrit levels were way down. This is the proportion of blood volume that is occupied by red blood cells, and is an integral part of a person's complete blood count results along with hemoglobin concentration, white blood cell count, and platelet counts. The nurse practitioner we spoke with said this is common for preemies. They think since her feedings were increased, she used all the red blood cells to digest the food, and then was not able to make more red blood cells quickly enough. So she needed a transfusion.

Not fun to get a phone call like that to start your Tuesday, but gosh love those nurses they are so nice, give great explanations, and are very quick to say "nothing is wrong, Elsie is fine, don't worry." Music to our ears. When we got there she was definitely not herself. You could tell she just did not feel well. Hopefully she'll feel better when we get there this evening.

I had my first post delivery check up yesterday. Blood Pressure is better, but I will have to be on the medication for a few more weeks. My incision looks good. I can drive this weekend, and got the okay walk Rudy. He was thrilled to death to hear me ask "wanna go for a walk?"

Love y'all,

Ellen

Another Good Report

At our visit yesterday evening Elsie had learned how to pull the CPAP out of her nose. I watched her push her little hands against the tubing, so the prongs would dislodge from her nostrils. She did this twice while we were there yesterday evening.

When this happens a high pitch 'beep' goes off at two second intervals to alert the nurses; and goes off until the prongs are back in her nostrils. I got the prongs back in each time, and she would go right back to pushing on the tubes.

She was wide awake when we were there and is responsive to my voice. She looks right at me when I talk to her, like she knows my voice. Her eyes are a deep blue. Wonder if she will keep that color? Ryan has beautiful blue eyes.

We finally told her good night and hoped if she went to sleep she would stop trying to get the prongs out.

At this morning's visit we got another good report. They are going to increase her feedings to 2 CCs of breast milk every three hours. The doctor said they may try to take the CPAP out to see how she does. Elsie's blood pressure has fluctuated up and down since she's been born, and the doctor is wondering if her agitation with the CPAP may be contributing to her high blood pressure.

They say that her lungs are fine, and they know this because when they remove the tubes to work on her (change fluids, IVs, etc) she continues breathing, her heart rate, respiratory, and oxidation numbers stay stable. So the doctor said they may try and see if she misbehaves with the CPAP out.

She was 1 lb 10 oz when they weighed her yesterday.

It was amazing to sit there and watch my 29 week old daughter push the tubes out of her nose. The first time she did it I was thinking "wait, she's not going to be able to get those out, is she? Oh yes she did. There is the alarm." The nurse this morning said she also figured out that if she pushes on her 'snuggly' and arches her back, then moves her head she can also get them out that way. They have her on a snuggly bed that has two straps across it in hopes of keeping her still.

Is anyone surprised that our child is already asserting herself at 29 weeks? Nope. That's our girl. You tell em if you don't like something sweetheart.

Love y'all,

Ellen

The First of Many Diaper Changes...

This morning we got another good report from the NICU. Elsie continues to have fewer and fewer episodes of Apnea and Bradycardia. According to Pregnancy.org Apnea is a "pause of breathing" and lasts 15-20 seconds, and is associated with Bradycardia or a slowing of the heart rate. Yesterday she had three episodes in 24 hours where the nurse had to actually stimulate her to get her heartrate back up, the others Elsie corrected on her own. When I spoke to the Doctor this morning she said that Elsie's lungs look great and seem to be mature past her 29 weeks, so they think this may be due to how developed (or underdeveloped) her brain is. She is simply forgetting to breathe. This is common for a baby of her gestational age. She is on a Sinus CPAP (the tubes you see going in her nose in the pics) that is hooked to a ventilator. Right now she is on a "back up" that sends 20 puffs of air into her lungs when she forgets to breathe. If she continues to do well today, they may try turning off this back up overnight tonight to see how she does. This is to eventually get her off the Sinus CPAP all together. As you can imagine, having prongs stuck in your nose 24/7 does not feel nice. Three times while we were there this morning Elsie tried to pull them out. She is not a fan.

The other major item to report: I got to change her diaper! We arrived right at the time for her "cluster of care" this morning. Instead of doing a diaper, then taking her temp a little while later, and then checking her blood pressure a little while after that; the NICU practices cluster care. This just means they do everything at once instead of constantly messing with her. So after the nurse took her BP, I got to take her temperature and then change her diaper. For those of you that are wondering, you take the temp under her arm. I stuck a little probe under her arm and then kept her arm by her side so we could get an accurate reading. She did have a dirty diaper when I changed her, and since her behind is so tiny it was a breeze to clean up! I wish I could post how tiny the diapers are. They are smaller than the palm of my hand and still seem large on Elsie!

Luckily, Daddy and I remembered the camera so he was there to capture this pic. A girls gotta have her accessories when changing baby diapers, right? Also, when I say Daddy...I mean my Daddy. Since he is retired he offered to stay here with us until I can drive. He has been awesome. Aside from driving me to the NICU twice a day; he went to Target with me on Tuesday, took me to get my brows done yesterday, and is currently cleaning my bathroom. A girl always needs her Daddy. Maybe one day Ryan will be doing the same for Elsie?

Love Y'all,

Ellen

We Survived the First Week

Elsie is eight days old today. Last Wednesday I went to my OBGYN's office to get my blood pressure taken after suffering from a migraine on Tuesday. Six hours later, our daughter was delivered via c-section. My doctor diagnosed me with Severe Preeclampsia. Preeclampsia is a condition that affects 5-8% of all pregnancies. It is typically seen in the first pregnancy, and according to the Preeclampsia foundation is characterized by swelling, headaches, changes in vision, and protein in the urine. However, they also point out that some women with rapidly progressive conditions report few symptoms. The cure is delivery of the baby.

There are no 'tests' to identify Preeclampsia in women that I am aware of. I really believe that my health and Elsie's health is a testament to my OBGYN's experience with high risk pregnancies, and my relationship with him. I hated to be the crazy pregnant lady calling about headaches, etc...but in the end those were the red flags that helped my doctor make a diagnosis. Thank you Dr. G.

So here we are, eight days later, with a beautiful 1 lb 9 oz daughter. Thus far she is doing well in the NICU.

Today they have increased her feedings to one CC of breast milk every three hours. She had another dirty diaper this morning, and there are no signs of infection. Her blood pressure has decreased. On Monday she received a standard brain ultrasound to check for hemorrhaging and it came back normal. They will do another scan at 30 days of life. We are very blessed.

To those of you in Conway, Birmingham, Houston, and everywhere in between thank you for all the prayers. We appreciate them more than words can express. It means so much to us to know that there are so many people who care about us. Keep the prayers going.

I never thought I would be a Mom who posts information about her child to the Internet. Due to the outpouring of support we have received it is just easier to post to this blog than return all the phone calls. Check back frequently for updates, or subscribe!

Love Y'all,

Ellen