but to get them on here, I need to remember where I put the cord to the camera that connects to the computer so I can get the pics off the camera. At this time, I have no idea where the heck I put that thing. Don't you hate that? I still have pregnant brain. Someone told me that this would go away...but we're going on 11 weeks post partum, and I'm lucky if I remember the keys to the car. SUCH FUN.
Okay so this past week was a big one. First, I got Mastitis. If you don't know what this is...google it. I think there are some men who read this who may not want to know, so I won't go into details. There may also be some nursing mothers reading this that I don't want to scare the crap out of. I will tell you that the only other time I felt that bad was after I had Elsie. Ryan helped diagnose me and my wonderful OBGYN called in a prescription for me on Christmas Eve Eve. I've been on antibiotics for 72 hours and am starting to feel like myself.
Secondly, Elsie is in an open crib, off oxygen, and taking six feedings (out of eight) by mouth. She loves the open crib and has been holding her temperature well. Yesterday she was quite congested from having tubes in her nose for so long, and now suddenly, no oxygen blowing down her nostrils. She is keeping her blood oxygenation levels up beautifully. I am nursing her three times a day and the nurses are giving her bottles when I am not there at night.
Now, before you go all, "why are you letting them give bottles?" This change happened on Wednesday in the middle of my sickness. I didn't want to hold Elsie back from progress just because I couldn't be there to nurse. And, it will help her get home more quickly if she can demonstrate that she can take more feedings by mouth. She is continuing to nurse well, and take my milk from the bottle beautifully.
She is definitely making progress. What else? Oh! She weighs 4 lbs 11 oz!
Love Y'all,
Ellen
Sunday, December 27, 2009
Monday, December 21, 2009
The Drive to get out of the NICU
For those of you keeping track; this Wednesday is week 10 in the NICU. Tomorrow, the last of the babies admitted the same week as Elsie, is being discharged. This is excellent for the baby and her family...they have faced and over come many challenges. At the last NICU support group meeting her mother asked "is anyone else still here (meaning the NICU)?" I was the only one to raise my hand. In response she said, "then you understand the drive to get out of the NICU." Yes ma'm, I totally do. It is bittersweet to see other children progress more quickly than Elsie. My mother and the nurses at the NICU remind me that they didn't start out as small as Elsie did. And she will get to come home. One day.
At our NICU support group Christmas Party another parent told me she actually contemplated simply walking out with her twin boys. Thinking, rationalizing to herself, "they can breastfeed. It's not like they will starve. Legally, what will they do if I just leave with them?" Looking back she realizes what a completely ridiculous thought this is to have. The truth is that is exactly where I'm "at." That is how crazy the emotions can make you; and how the drive to "get out" can almost consume you. I am thankful to hear NICU graduate parents and their stories. They assure me that I'm not crazy, at least, not yet.
At the same time (God please do not let me jinx this by putting this out there on the Internet. Love, Ellen); I feel like we are turing a corner. Elsie finally got the hang of breast feeding on Friday. She is now nursing twice a day. For those of you who tried and were not successful nursing. I hear you. We've been "practicing" for almost four weeks now. Her cannula has been turned down to one liter and she is doing well. They may turn her down to half a liter in a few days if she continues to have good stats.
She is also 4 lbs 3 oz. Still in an isolette. They want to be sure she has feeding down, can consistently put on weight, and maintain her temperature before they move her to an open crib. The idea being make sure she can do it all on her own before you actually make her do it all on her own in an open crib. She will burn calories doing everything by herself so they need to make sure she can handle nursing well so she continues to put on weight.
We are making progress. I know we are. It's just not as quickly as I would have liked. As I've said on here before. She's like her Daddy. She does what she wants when she wants. Not a minute sooner. Sheesh.
Love Y'all,
Ellen
At our NICU support group Christmas Party another parent told me she actually contemplated simply walking out with her twin boys. Thinking, rationalizing to herself, "they can breastfeed. It's not like they will starve. Legally, what will they do if I just leave with them?" Looking back she realizes what a completely ridiculous thought this is to have. The truth is that is exactly where I'm "at." That is how crazy the emotions can make you; and how the drive to "get out" can almost consume you. I am thankful to hear NICU graduate parents and their stories. They assure me that I'm not crazy, at least, not yet.
At the same time (God please do not let me jinx this by putting this out there on the Internet. Love, Ellen); I feel like we are turing a corner. Elsie finally got the hang of breast feeding on Friday. She is now nursing twice a day. For those of you who tried and were not successful nursing. I hear you. We've been "practicing" for almost four weeks now. Her cannula has been turned down to one liter and she is doing well. They may turn her down to half a liter in a few days if she continues to have good stats.
She is also 4 lbs 3 oz. Still in an isolette. They want to be sure she has feeding down, can consistently put on weight, and maintain her temperature before they move her to an open crib. The idea being make sure she can do it all on her own before you actually make her do it all on her own in an open crib. She will burn calories doing everything by herself so they need to make sure she can handle nursing well so she continues to put on weight.
We are making progress. I know we are. It's just not as quickly as I would have liked. As I've said on here before. She's like her Daddy. She does what she wants when she wants. Not a minute sooner. Sheesh.
Love Y'all,
Ellen
Monday, December 14, 2009
And we're back
It's been seven days since my last post. Sorry guys. I got busy....
So in the last seven days Fancy and Papa Jim have visited, we got a new puppy, and had a virtual baby shower. As far as the puppy goes; to those of you who just said "WHAT?! Are you nuts Ellen?" (like my mother did). The answer is yes. As I told Fancy, we like to keep the crazy meter running at about an eight (out of ten) in this house. So the newest member of The Bailey Family is Beatrix Bailey, born October 17. She is a cocoa colored Shih Tzu, and also a spitfire. She and Elsie will be great friends one day. Rudy is starting to play with her, and I am trying to keep her away from the pool.
We had a great visit with Fancy and Jim. The nursery is finished thanks to Jim putting up the curtains and hanging the artwork. I will post pics. I would also like to point out this was a group effort. Ryan and I painted the walls; Ryan, my Dad and Grahammy put the crib together; Jim put up the curtains and artwork with input from Fancy. I love that. Thank you all. We couldn't have done it without y'all!
Elsie is doing well. She did not gain much weight last week. This is because she had been nursing twice a day and is not able to nurse strong enough to express any milk. So we are teaching her with a supplemental nursing system (SNS) and she is continuing to get feedings through her nose tube. We did this at her 5 pm feeding yesterday and she gained 40 grams. So a few more days and then we will try again with no (SNS) and/or introduce a bottle.
Currently she is 1740 grams...so we are hoping she gets out of the isolette in the next week or so. Can you believe that? Progress, people.
Love Y'all,
Ellen
Monday, December 7, 2009
Thank you, Ryan's workplace
Ryan and I went to his company Christmas party on Saturday night and had wonderful time. We saw a lot of people we hadn't seen in a long time. I will have to post the official photo later. The picture people posed us and I swear it looks like a Prom picture. It is hysterical. We will not be using it as our Christmas card this year, sorry folks.
The party was awesome. Ryan and I look forward to it each year, and were not disappointed. I just wanted to say thank you to the employees and their families. So many of you came up to us to get a report on Elsie, to say hang in there, and to offer prayer. We really appreciate every one's kind words and prayers. The prayers are working, please continue. We thank God everyday that Ryan is fortunate enough to work for such a caring company. Thank you!
Elsie is on the back end of a cycle of congestion so maybe the next few days will be good. We hope so. Fancy and Papa Jim are coming to visit this weekend, so she needs to be good! :) Elsie continues to nurse well. She knows what she needs to be doing (suck, swallow, breathe) but when her nose is so congested she cannot breathe, it makes the process very frustrating for her. It is encouraging that she is able to latch on, suck for a few minutes, and not have any episodes. As she continues to grow we hope she has more good days.
Love Y'all,
Ellen
The party was awesome. Ryan and I look forward to it each year, and were not disappointed. I just wanted to say thank you to the employees and their families. So many of you came up to us to get a report on Elsie, to say hang in there, and to offer prayer. We really appreciate every one's kind words and prayers. The prayers are working, please continue. We thank God everyday that Ryan is fortunate enough to work for such a caring company. Thank you!
Elsie is on the back end of a cycle of congestion so maybe the next few days will be good. We hope so. Fancy and Papa Jim are coming to visit this weekend, so she needs to be good! :) Elsie continues to nurse well. She knows what she needs to be doing (suck, swallow, breathe) but when her nose is so congested she cannot breathe, it makes the process very frustrating for her. It is encouraging that she is able to latch on, suck for a few minutes, and not have any episodes. As she continues to grow we hope she has more good days.
Love Y'all,
Ellen
Friday, December 4, 2009
Need to post...but really it's just more of the same
Elsie is doing well. She nursed (intermittently) for 19 minutes this morning. Her nurse and I deduced that her congestion must have been making her feel bad, and thus her refusal to nurse the day before. As my Mama said "you can't make a baby eat." True. Even more so for one with a congested nose that has multiple tubes up said nose. Bless her heart.
So feeding tube has been moved back to her mouth to relieve the swollen nasal passages. Her cannula has been bumped back up to 2 liters to make sure the air can blow past the congestion in her nose. She can nurse with the feeding tube in her mouth, but according to the occupational therapist, this can be deceiving. It may look like she is tolerating nursing well, but doing so with the feeding tube down her throat can cause issues later (who would have ever thought?). To avoid this we may lay off on nursing for a few days until the nasal passages are not as swollen, and the feeding tube can go down her nose. Something about the swallowing, with the tube in their throat can lead to developmental issues down the road.
So we are kind of in a cycle. Every few days Elsie gets really congested. She doesn't feel well, so then she doesn't want to nurse. To help her breathe they bump up the cannula. What does this do? Dry her nasal passages out even more...which does what? Causes congestion. The doctor says that this should be alleviated when her nasal passages grow a little larger.
A sentence I never in a million years expected to type: Please pray that my daughter's nasal passages grow as she gains weight, so she won't be so stuffy and we can break this cycle.
Love Y'all,
Ellen
So feeding tube has been moved back to her mouth to relieve the swollen nasal passages. Her cannula has been bumped back up to 2 liters to make sure the air can blow past the congestion in her nose. She can nurse with the feeding tube in her mouth, but according to the occupational therapist, this can be deceiving. It may look like she is tolerating nursing well, but doing so with the feeding tube down her throat can cause issues later (who would have ever thought?). To avoid this we may lay off on nursing for a few days until the nasal passages are not as swollen, and the feeding tube can go down her nose. Something about the swallowing, with the tube in their throat can lead to developmental issues down the road.
So we are kind of in a cycle. Every few days Elsie gets really congested. She doesn't feel well, so then she doesn't want to nurse. To help her breathe they bump up the cannula. What does this do? Dry her nasal passages out even more...which does what? Causes congestion. The doctor says that this should be alleviated when her nasal passages grow a little larger.
A sentence I never in a million years expected to type: Please pray that my daughter's nasal passages grow as she gains weight, so she won't be so stuffy and we can break this cycle.
Love Y'all,
Ellen
Wednesday, December 2, 2009
Level 2!
Elsie is officially "Level 2" in the NICU. This doesn't mean much to people outside the NICU. But today, on the dry erase board in the NICU lobby, Elsie had a two by her name instead of a three. Level 3 is for the sick babies. Elsie is not sick (relatively) anymore...just what they call a 'feeder grower.' For preemies and their parents, this is a big step!
She is starting to show her personality. This evening while getting mad during nursing, she smiled and even laughed a little bit. I don't want to give details (TMI, for those men who read this), but she is her father's daughter. Just letting us know that she will do what she wants to do when SHE is ready to do it. Not a minute sooner. Sound like anyone else we know?
Elsie has a mean case of diaper rash. When her nurse and I were discussing if it looked like it was getting better vs. worse; she said "well, it's not bleeding." OMG. I didn't even know diaper rash could bleed. We'll end on that note...
Love Y'all,
Ellen
Tuesday, December 1, 2009
"She's a Small Turkey"
Elsie is 3lbs 3 oz! Since my last post the major change is she is now breastfeeding twice a day. Right now she isn't able to get much milk on her own (she's still so small) so we are really just practicing. This is called 'non-nutritive' breast feeding in the NICU. Elsie is doing well. She seems to be able to coordinate getting the milk, continuing to breathe, and swallowing. Such a big girl. Until she is able to get enough milk on her own she will continue to receive milk through her feeding tube. She is getting about an ounce every three hours.
We had a great Thanksgiving with my family. Everyone contributed to dinner on Thursday, and it turned out beautifully. If only the Hogs had won; it would have been a perfect weekend! :)
In other news...who knew putting together a crib would take so long? While my dad was here he and Ryan put together Elsie's crib. Since her room is on the small side we decided to get a crib and changing table combo. The changing table is built onto the end of the crib. It took my Dad, Ryan and Grahammy two and a half hours to put it together last Friday night.
So now we've got the room painted and the crib put together! Woo hoo. Both major items off my list.
Love Y'all,
Ellen
We had a great Thanksgiving with my family. Everyone contributed to dinner on Thursday, and it turned out beautifully. If only the Hogs had won; it would have been a perfect weekend! :)
In other news...who knew putting together a crib would take so long? While my dad was here he and Ryan put together Elsie's crib. Since her room is on the small side we decided to get a crib and changing table combo. The changing table is built onto the end of the crib. It took my Dad, Ryan and Grahammy two and a half hours to put it together last Friday night.
So now we've got the room painted and the crib put together! Woo hoo. Both major items off my list.
Love Y'all,
Ellen
Wednesday, November 25, 2009
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
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
Monday, November 23, 2009
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
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
Sunday, November 22, 2009
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
Thursday, November 19, 2009
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
Tuesday, November 17, 2009
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
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
Saturday, November 14, 2009
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
Thursday, November 12, 2009
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
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
Wednesday, November 11, 2009
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
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
Tuesday, November 10, 2009
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
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
Saturday, November 7, 2009
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
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
Friday, November 6, 2009
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
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
Wednesday, November 4, 2009
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
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
Monday, November 2, 2009
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.
Thanks to everyone for their kind words, thoughts, and prayers thus far. Keep them coming. We appreciate them so much.
Love Y'all,
Ellen
Saturday, October 31, 2009
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
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
Wednesday, October 28, 2009
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
Tuesday, October 27, 2009
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
Saturday, October 24, 2009
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
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
Friday, October 23, 2009
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
Thursday, October 22, 2009
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
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