If it starts to seem as though I am not posting as much, its because there aren't too many changes from day to day. This is a good thing. Veronica is growing and getting a little stronger everyday.
Andrew and I had a wonderful visit with Veronica this evening. On most days, we visit the NICU separately. That way, our five other children have one of us at home with them, and Veronica has more time with at least one parent by her side. But Tuesday nights are the night we visit together. Tonight I was able to hold Veronica while she was off of CPAP. There were no prongs in her nose and no hat on her head. It was fabulous!! She did quite well and I was able to hold her that way for about 25 minutes. I held a "blow by" tube close to her face so that she was able to breath in oxygen that was blowing from the tube. I'm hopeful that the fact she did so well means that in a few weeks she will start to transition off of CPAP to room air. What a wonderful day that will be....
Tuesday, May 31, 2011
Sunday, May 29, 2011
TP Tube
Veronica's TP tube (transpyloric) was removed this morning. The TP tube was her feeding tube which allowed the breastmilk to go directly into her intestines instead of her stomach. As I understand it, the benefit of the TP tube was that Veronica didn't have to digest any milk, which could have presented complications. Instead of worrying about feeding issues, they were able to focus primarily on issues related to breathing. And since Veronica is now stable on CPAP, it was time for the next step related to feeding. So her milk now goes through her OG tube (orogastric) directly into her stomach. So far she is tolerating it well which is a great sign. In another 4 weeks or so, she will likely begin bottle feeding.
Saturday, May 28, 2011
Sibling Visits
We try to take the kids in to see Veronica once a week. NICU rules allow only two visitors at a time (one being the parent) so the kids have to take turns. They look forward to their visits and always argue over who gets to see Veronica first. They get excited when they see her with her eyes open. Today Liesl changed her diaper and was thrilled. Hopefully it won't be too long before she is changing Veronica's diapers at home :).
Liesl (9) |
Theodore (7) |
Linus (5) |
Sebastian (3) |
Josephine (1 and too young to visit the NICU) |
Friday, May 27, 2011
1000 grams
The weight of NICU babies is documented in grams and today Veronica is 1000 grams!! This is another milestone on her journey. Just 140 more grams and she will have doubled her birth weight. Go, Veronica, go!!!
P.S. 1000 grams = 2 lbs. 4 oz.
P.S. 1000 grams = 2 lbs. 4 oz.
Thursday, May 26, 2011
30 Weeks
Veronica is 30 weeks today.....10 more weeks until her due date. It's still hard to believe. Amazingly, she continues to do well. Her labs looked good this morning so the IV came out. Her feeds were increased to 6.7ml per hour and she has tolerated the increase very well. Currently she is fed through a TP tube which goes through her mouth directly into her intestine. She also has an OG tube which goes through her mouth into her stomach. This tube is used to eliminate excess air in the stomach. The nurses also check if any residual milk is left from the feedings. Hopefully they will soon eliminate the TP tube and she can be fed through the OG tube. In about a month or so, she may even get to try a bottle. As well as she is doing, we still have a ways to go.
Andrew was able to hold Veronica for the first time this evening.
Andrew was able to hold Veronica for the first time this evening.
Look at her little hand! |
Wednesday, May 25, 2011
Transfusion
Veronica needed a blood transfusion today which is fairly routine for a 24 weeker. She had multiple transfusions during the first few weeks but hadn't needed one in quite some time. While we were assured this was nothing to be concerned about, it still felt like a step back. I hated seeing her get an IV put into her hand, although she didn't even cry when they put it in. And they had to stop her feedings for 7 hours which is standard procedure for a transfusion. She will keep the IV in overnight and they will draw some labs in the morning. Hopefully the IV can come out after that...and stay out.
Tuesday, May 24, 2011
Holding Veronica - Day 2
I held Veronica again today for about 30 minutes. She did great. I wasn’t able to hold her yesterday because her temperature was a little low. It was nothing to be concerned about, but because of her inability to regulate her temperature, it was best that she remain in the isolette.
Veronica continues to do well overall. When we look back on the first few days and weeks even, we are amazed at how far she has come. She used to have transfusions every day or every other day. Now she has none. She used to be on multiple antibiotics. Now she is on none. Initially she was fed intravenously with a solution of nutrients. Now she is on full feeds of breast milk. At one point she was getting blood work done every morning. Now it is once a week. Blood gases were taken every few hours. Now they are only taken as needed. She was intubated and extubated several times. But now she seems remarkably stable on the bubble CPAP – breathing on her own, with support, but only requiring 21 – 23% oxygen (21% is room air).
As much as we would prefer not to be in this position, we’re thrilled with her progress and so very grateful for how far she has come.
Monday, May 23, 2011
Sunday, May 22, 2011
Holding Veronica
I held Veronica for the first time today and it was wonderful!! We had some challenges with the CPAP prongs coming out of her nose a few times but overall it went really well. If she continues to do well, we can expect to hold her for about 30 minutes a day for the next few weeks. I can't wait to do it again! I guess I'll have to let Andrew have a turn as well :)
This is when the nurse first handed her to me, before she put the CPAP prongs back in her nose. It was so great to see her face up close! |
Here she is after the "kangarooing", getting settled back into her home away from home. |
Saturday, May 21, 2011
Kangaroo Care
Kangaroo care is a technique used primarily for premature babies in which the parent holds the baby on his or her bare chest so that there is skin to skin contact. A blanket is then put over the baby. Not only does this practice promote bonding, but it has physiological benefits as well. Kangaroo care can help preemies regulate their body temperature as well as their heart and breathing rates. It also enhances growth and can lead to an earlier discharge from the NICU.
Why am I telling you about kangaroo care? Because we are hopefully going to be able to do it tomorrow!! That's the plan if Veronica continues to do as well as she has been doing.
We're so excited!!
Why am I telling you about kangaroo care? Because we are hopefully going to be able to do it tomorrow!! That's the plan if Veronica continues to do as well as she has been doing.
We're so excited!!
Comments
Thanks to all who have posted comments on the blog. All positive comments are welcome and I’m sure Veronica will be thrilled to read them when she is old enough. All of the emails and Facebook messages are appreciated as well but Veronica won't necessarily get to read those J.
A few people have indicated that they have had trouble posting comments so I thought I would try to provide some guidance. In order to post a comment, you must scroll down to the bottom of a post where it says “comments”. When you click on “comments”, there will be a box displayed which will allow you to post a comment. In order to actually post it, you will need to create a google account which only takes a few minutes. You can do this by selecting “google account” in the box entitled “comment as” and following the prompts. Once you create the google account, it will be simple to add comments when you return to the blog.
If anyone knows of an easier way, feel free to “comment”. Thanks!
Friday, May 20, 2011
Bubble CPAP!
Veronica transitioned to bubble CPAP at noon today which essentially means she is breathing on her own! With the bubble CPAP, she receives supplemental oxygen and additional pressure (PEEP) to help keep her lungs inflated when she exhales. Because of her prematurity, her lungs are poorly developed which means they would essentially deflate with every breath if she did not have that additional pressure. But the actual breathing she must do all by herself. And she is doing it!! This is another step in the right direction. They will do a blood gas later this afternoon to check her carbon dioxide level to make sure the is eliminating the appropriate amount of carbon dioxide. They will also get a chest x-ray to take a look at her lungs.
Here are some photos of bubble CPAP. It makes a lovely bubbling sound which was music to my ears.
Here are some photos of bubble CPAP. It makes a lovely bubbling sound which was music to my ears.
And here is Veronica, enjoying her bubble CPAP...
Thursday, May 19, 2011
29 Weeks
Its funny how we keep track of Veronica's age not only in terms of her days since birth, but her gestational age as well. Both seem equally as important at this point. And from what I hear, her gestational age will be more what we focus on over the next few years of her life - especially since she will be nearly 16 weeks behind other babies born around the same time. There are so many unknowns in terms of how she will develop - but we are hopeful that she will continue to progess and grow as she is doing now.
Veronica continues to breath with the assistance of CPAP but they are weaning her settings slowly and she has been tolerating the changes well. We are expecting her to transistion to the bubble CPAP any day now. She will have to do all of the breathing on her own but the bubble CPAP will also allow her to grow lung tissue which will help her in the long run. As I understand it, this is not something that is possible when babies are breathing with mechanical support. Once on the bubble CPAP, she will likely remain on it for several more weeks and then transition to room air. This was encouraging to hear. From much of my research and connecting with other parents of micopreemies, I was expecting that she would be discharged with some form of oxygen support. But apparently it is very rare for babies discharged from the GW NICU to go home on oxygen. Just one more reason we are so satisfied with the GW NICU. I can't imagine how much more difficult this whole journey would be if we were not confident in the care she is receiving.
We're hoping that in the upcoming days and weeks we will not have too much to report. The progess is slow but clearly going in the right direction. As one of my Facebook friends put it, slow and steady.....
Veronica continues to breath with the assistance of CPAP but they are weaning her settings slowly and she has been tolerating the changes well. We are expecting her to transistion to the bubble CPAP any day now. She will have to do all of the breathing on her own but the bubble CPAP will also allow her to grow lung tissue which will help her in the long run. As I understand it, this is not something that is possible when babies are breathing with mechanical support. Once on the bubble CPAP, she will likely remain on it for several more weeks and then transition to room air. This was encouraging to hear. From much of my research and connecting with other parents of micopreemies, I was expecting that she would be discharged with some form of oxygen support. But apparently it is very rare for babies discharged from the GW NICU to go home on oxygen. Just one more reason we are so satisfied with the GW NICU. I can't imagine how much more difficult this whole journey would be if we were not confident in the care she is receiving.
We're hoping that in the upcoming days and weeks we will not have too much to report. The progess is slow but clearly going in the right direction. As one of my Facebook friends put it, slow and steady.....
Wednesday, May 18, 2011
Tuesday, May 17, 2011
Monday, May 16, 2011
4 Weeks Old
It’s hard to believe that it’s only been 4 weeks since Veronica was born. That day seems so long ago; so much has happened since her birth. I have connected with others who have had babies in the NICU, and some of them have said that in a year or so, when we look back, we won’t know how we ever made it through these days and weeks. I already wonder that now when I look back on Veronica’s first few days. She certainly has come a long way. We have as well. I am almost to the point where I have stopped asking myself why or how this happened; I am mostly focused on her progression and how grateful I am that she is doing as well as she is. She continues to improve with her breathing and they are slowly weaning her off the CPAP machine. The next step will be bubble CPAP, which is non mechanical - she will need to do all of the breathing on her own. The NICU staff at George Washington are aggressive in terms of breathing and make their babies work. This is a good thing, although it's sometimes hard to watch from a parent's perspective. But their outcomes in terms of lung disease are much better than those of other NICUs. And I learned today that they rarely discharge babies who require oxygen at home. It's nice to start thinking about her being discharged....it's still a long ways away but what a wonderful day it will be.
Some pictures from today:
Sunday, May 15, 2011
May 15
Veronica has had a very good day today. Her breathing continues to improve and her oxygen requirement levels remain fairly low. The levels were in the 50's on Thursday when we were concerned that they might put her back on the ventilator. The levels today were in the high 20's. They have decreased the respiratory settings on the CPAP machine which means she is doing more breathing on her own.
She is on full feeds of breast milk and is getting 6 ccs an hour into her TP tube which goes directly into her intestine. Her weight this evening was 880 grams which is slightly more than 1 lb, 15 oz . 907 grams equals 2 lbs....so maybe she'll get there in another day or two.
Veronica has her first eye exam on Wednesday and I am guessing there will be many more to follow. Given how early she was born, Veronica is at high risk for developing retinopathy of prematurity (ROP), which is one of the leading causes of childhood blindness. There are varying degrees of ROP and the good news is that most cases will resolve on their own. But hopefully we won't even have to get to that point.
Overall, Veronica is doing quite well for her age. We thank you all for your prayers and continued support.
She is on full feeds of breast milk and is getting 6 ccs an hour into her TP tube which goes directly into her intestine. Her weight this evening was 880 grams which is slightly more than 1 lb, 15 oz . 907 grams equals 2 lbs....so maybe she'll get there in another day or two.
Veronica has her first eye exam on Wednesday and I am guessing there will be many more to follow. Given how early she was born, Veronica is at high risk for developing retinopathy of prematurity (ROP), which is one of the leading causes of childhood blindness. There are varying degrees of ROP and the good news is that most cases will resolve on their own. But hopefully we won't even have to get to that point.
Overall, Veronica is doing quite well for her age. We thank you all for your prayers and continued support.
Saturday, May 14, 2011
No More PICC Line!
Veronica’s PICC line was removed today! The PICC line has been in her arm since shortly after her birth, providing nutrition and antibiotics as needed. She finished her last course of antibiotics today and she no longer needs it for nutrition since she is getting full feeds of breast milk. This was not a decision the doctors made lightly because having the PICC line in means there is easy access should emergent medication or fluid be needed. But because she is doing so well, they decided it was time to take it out. This is significant progress. Having a PICC line in increases the risk of infection, not to mention the fact that it's uncomfortable having the line in day in and day out.
Watching the doctor remove the line was an interesting emotional experience. There was so much tape on Veronica’s arm; it took several minutes for the doctor remove it. Clearly this was painful for Veronica. She cried, clenched her fist and kicked her legs. While it broke my heart to see her in pain, I couldn’t help be proud of her feistiness. And hearing her cry is amazing in so many ways. Minutes after the line was removed, Veronica fell back to sleep – with both arms now free of any IV’s or lines. What a beautiful sight to see. I left the NICU with tears in my eyes, but this time the tears were happy ones.
Three Days
Veronica remains ventilator free and it's been almost three days! We are encouraged by this and pray that it continues. It's still so very difficult to see all that she must endure but she's a fighter and we're grateful for that.
More soon....
More soon....
Thursday, May 12, 2011
28 Weeks
Veronica is 28 weeks today – gestational age anyway. This was a date we were trying to get to as babies born at 28 weeks or later have significantly fewer problems than those born earlier. Obviously, that didn’t happen but we are so fortunate in that Veronica is doing relatively well for her young age.
She has been off the ventilator now for just over 24 hours and she is hanging in there. Her blood gases have shown that her carbon dioxide level has risen but not to the point that they are overly concerned (yet). Her oxygen requirement has increased significantly though and is currently at 55%. While she was on the ventilator, the levels were generally in the 30’s. Room air has a 21% oxygen level which is the ideal. Providing additional oxygen to preemies, while needed, can cause severe eye damage. If Veronica gets up to 60%, they will likely consider reintubating her. The nurses are great at watching the levels – they try to wean her but will certainly give her what she needs to be comfortable.
Her weight is currently 880 grams or 1 lb, 15 oz…..2 lbs, here we come!!!
Wednesday, May 11, 2011
Diapers
Veronica has moved up to the next diaper size! The one on the left is her original diaper. The one in the middle is her current size. The one on the right, is Josephine's (21 months, size 4).
This is progress!!
This is progress!!
May 11 - Part 2
Veronica is holding her own on CPAP. When she was on CPAP last time, it was only for 16 hours. So we’re hoping, and confident, that it will be longer this time…..and maybe, she might even stay off the ventilator for good. If she does well on CPAP, they would eventually transition her to what they call bubble CPAP, which is less invasive and not mechanical – which would allow for her lung tissue to grown. It was good to see her on CPAP, but I missed seeing her face….
In case anyone is wondering, CPAP is delivered through the nose. The wrap around her head is used to keep her mouth closed so that the air that is going into her nose, doesn't come right out through her mouth. She also has a pacifier in her mouth which has the same purpose.
May 11
When I arrived at the NICU yesterday morning, I learned that they had to increase the settings on Veronica’s ventilator. Apparently she was so tired that she wasn’t doing any breathing on her own – she was letting the ventilator do it all for her. She was also desatting a lot and to a much lower degree. And her carbon dioxide levels were higher. I was a little discouraged by this and feared that it might set her back in terms of their plans to extubate, which we were told they would try to do today.
But when Andrew and I visited last night, the doctor informed us that they still planned to extubate Veronica today. Her blood gases looked good and she was considered stable. I wasn’t convinced that the doctor was confident she was ready to be off the ventilator but I was glad they were ready to give her another chance. On the hand, I had mixed emotions – being off the ventilator means more work for Veronica. I know it’s better for her in the long run, but it’s challenging to expect your nearly 2 lb baby to work so hard to breath.
I called this morning and learned that she was extubated at 6:00am. Hooray for Veronica!! I’ll be heading in to see her in a few hours. I can’t wait to get there.
Here is a photo from yesterday. I love seeing her with her eyes open - but sometimes she looks so tired.
Tuesday, May 10, 2011
Monday, May 9, 2011
Sunday, May 8, 2011
Update
Veronica spent 16 hours on CPAP but unfortunately needed to be reintubated this morning. The level of oxygen that she was requiring with the CPAP was just too high, which could potentially cause severe eye damage. While going back on the ventilator was disappointing, we knew it was a possibility. And when we went to bed last night, we knew that it was likely. So they will try again in a few days and we will hope and pray that she remains off the ventilator for good. Being on the ventilator for too long puts her at risk for chronic lung disease.
While I was visiting with Veronica today, I had a bit of a meltdown. I cry fairly regularly these days but I usually try to contain my tears in public. But today I just couldn’t keep them in. I was comforted by Veronica’s nurse as well as one of the doctor’s and within a few minutes, I felt so much better. They have a way of doing that. The doctor pointed out that while it is understandably difficult to see what Veronica is going through, she is doing much better than most other preemies her age. And despite the fact that she is back on the ventilator, she remains on very low settings, which lessens the risk of lung disease. The NICU doctors and nurses are so concerned about this potentially serious complication which is why they push the babies to do some breathing on their own. I learned that the NICU at George Washington University Hospital has a significantly lower rate of lung disease compared with other NICUs. This is what I needed to hear.
So when I left the NICU, I was feeling better and I remembered that as bad as things are right now, they could be a whole lot worse. So I started to think about all of the things I am thankful for in this whole ordeal. Here are some of them, in no particular order:
- A vaginal birth (after 5 prior c-sections).
- The steroid shots given to me when I was admitted (which helped to mature Veronica’s lungs).
- The six days from when my water broke that Veronica remained in utero.
- The amazing doctors and nurses in the NICU.
- No brain hemorrhage.
- My five children at home who make me laugh.
- My husband.
- Friends and family who are supporting us in so many different ways.
- My faith which gives me strength.
- Two words - breast milk
- An awesome, hospital grade breast pump.
- Veronica’s stable vital signs.
- Veronica’s baptism on April 19th.
- Amazing medical technology.
- Several ventilator free days.
- No more feedings through the central line – it’s all about the breast milk now.
- Very low vent settings.
- My ability to function on fewer than 6 non consecutive hours of sleep.
- She’s a girl. (Girl preemies have a better prognosis than boy preemies.)
Preemie Mother's Oath
There are women that become mothers without effort, without thought, without patience or loss and though they are good mothers and love their children, I know that I will be better.
I will be better not because of genetics, or money or that I have read more books but because I have struggled and toiled for this child.
I have sat in the NICU and waited.
I have cried and prayed.
I have endured.
Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.
I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed her and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.
I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.
Whether I parent a preemie with physical challleges or medical issues, I will not be careless with my love.
I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.
I have prevailed.
I have succeeded.
I have won.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.
I listen.
And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.
Yes I will be a wonderful mother.
Author Unknown
I will be better not because of genetics, or money or that I have read more books but because I have struggled and toiled for this child.
I have sat in the NICU and waited.
I have cried and prayed.
I have endured.
Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.
I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed her and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.
I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.
Whether I parent a preemie with physical challleges or medical issues, I will not be careless with my love.
I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.
I have prevailed.
I have succeeded.
I have won.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.
I listen.
And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.
Yes I will be a wonderful mother.
Author Unknown
Saturday, May 7, 2011
CPAP
Veronica was extubated today!! She is back on CPAP (continuous positive airway pressure). This is good news but we are trying not to get too excited as we know she can be put back on the ventilator at any time. So now it's time for her to work and do some breathing on her own. Go, Veronica, go!!
Friday, May 6, 2011
May 6
Veronica had a fairly good day. She remains on the ventilator as you can see by the picture. We really hope she can successfully transition to CPAP soon. Her weight is about 1 lb, 13 oz and we're anxiously awaiting the day she breaks 2 lbs. She has been tolerating her feedings well so they have been increased to 8 cc's of breast milk ever three hours.
Clearly the progress is slow.....but little by little, she is growing and gaining strength.
Thursday, May 5, 2011
Feisty
According to the Oxford Dictionary online, the definition of feisty is as follows: lively, determined, and courageous. Several of Veronica's nurses have described her as being feisty, a description that is generally not used to describe micro preemies but one that I welcome. The NICU nurse who was there at the delivery said they were surprised that she came out pink and that she was crying, again not common for a micro preemies. She started off stronger than most and her resiliency continues to amaze me.
Veronica had a good day today which is always a relief. She remains on the ventilator but her settings are still low and they are looking to wean her off. She had no transfusions, a nice break, and her breast milk feedings are up to 6 cc's every three hours.
Here is a picture from today - Veronica at 27 weeks gestation, 17 days of life.
Veronica had a good day today which is always a relief. She remains on the ventilator but her settings are still low and they are looking to wean her off. She had no transfusions, a nice break, and her breast milk feedings are up to 6 cc's every three hours.
Here is a picture from today - Veronica at 27 weeks gestation, 17 days of life.
Wednesday, May 4, 2011
How We Are Doing
People often inquire about how Andrew and I are holding up through all of this. All things considered, I would say we are doing as well as we can be. It is by no means easy, but we really have no choice but to deal with it and do the best we can. We certainly are blessed by the love, prayers and support of so many people, both near and afar. It really does help and provides great comfort. The outpouring of support has been overwhelming to say the least. We are so thankful for the meals, gift cards, groceries, housecleaning (thanks, Dad!) child care, transportation assistance, phone calls, Facebook messages, emails, thoughts and most importantly, the prayers.
Our five children at home are doing amazingly well, despite the very difficult circumstances with which we are dealing . I'm not sure they really understand the seriousness of Veronica's early arrival. Clearly the little ones don't. Josephine, 20 months, doesn't even know she is a big sister. And Sebastian, nearly 4-years-old, gets upset at times that we are constantly going back and forth to see "Baby Beronica" at the hospital. The good thing is that they do ask to see her, particularly Liesl, age 9. We have taken the four older ones to see Veronica on two separate occasions. They are only allowed to stay briefly but I do love that they are able to visit with her. We hope to keep the visits up weekly if possible.
Our five children at home are doing amazingly well, despite the very difficult circumstances with which we are dealing . I'm not sure they really understand the seriousness of Veronica's early arrival. Clearly the little ones don't. Josephine, 20 months, doesn't even know she is a big sister. And Sebastian, nearly 4-years-old, gets upset at times that we are constantly going back and forth to see "Baby Beronica" at the hospital. The good thing is that they do ask to see her, particularly Liesl, age 9. We have taken the four older ones to see Veronica on two separate occasions. They are only allowed to stay briefly but I do love that they are able to visit with her. We hope to keep the visits up weekly if possible.
As of today, Veronica remains on the ventilator but she is stable and the settings are still low. I’m not sure when they will extubate her. It’s a tough call and I’m glad I’m not the one who has to make the decision. She is certainly more comfortable on the ventilator and taking her off has its own risks. But the longer she remains on the ventilator, the higher the risk of permanent lung damage. So they will continue to watch her oxygen levels, check her blood gases (every 8 hours) and make a decision from there.
The good news is that she is tolerating her feedings very well and she is now taking 4 ccs of breast milk every 3 hours, except when she has a transfusion, which is still just about every day. Also, the results of her brain ultrasound from Monday were normal – meaning no hemorrhages. Any bleeding in the brain (which is common in micro preemies) would have occurred by now so this something we can stop worrying about. There are still other things to worry about of course, but anytime we can check something off the list of potential problems, we are certainly glad to do so.
Thanks for following the blog and for continuing to keep us in your prayers.
Monday, May 2, 2011
One Step Forward, One Step Back
Once again we had a day of ups and downs. Veronica was extubated earlier and taken off the ventilator. She returned to the CPAP which she was on for most of the first two weeks of her life. This was a good sign but we knew that there would always be a chance that she would need to return to the ventilator. I was in the NICU at the time the decision was made to extubate, but I was asked to step away. Apparently the procedure is invasive and not one they recommend parents observing.
While I was there, I was also informed that Veronica’s feedings would increase to every three hours. She would still be getting 1 cc of breast milk but after 12 hours, they would look to increase the amount and assess whether Veronica could tolerate the increase. These are all good signs. And if I haven’t mentioned it before, I am a huge fan of breast milk. Research has shown that the benefits of breast milk for premature infants are even more significant than they are for term infants. Pre term breast milk is actually better than term breast milk. It’s as if my body knows that Veronica came early and is producing the best milk it can for her. Pre term milk contains more protein, fat, calcium and nutrients than term milk. It’s truly amazing. So the fact that Veronica is starting to get more milk in her is a very positive step.
When I left the hospital I was hopeful and feeling good about the day’s progress. I called the NICU a few hours later to see how Veronica was doing on the CPAP and all was well. Unfortunately, when Andrew returned in the evening, Veronica needed to be re-intubated. Her carbon dioxide levels were slowly rising and she was not doing well on the CPAP. So she is back on the ventilator and will probably remain on it for a few more days.
Hearing this was concerning and I wondered if Veronica was getting worse. When I returned to the hospital this evening, I was assured by the doctor on duty that Veroncia is not getting worse – but her recent breathing challenges are likely the result of the infection she has been fighting (which by the way, was E. coli). I guess I didn’t realize the effect that the infection had on her. I thought once they figured out what it was, they could treat it and be done with it. But the infection truly was a set back for Veronica and impacted her entire being. The good thing, however, is that once the infection is completely gone, the expectation is that Veronica will resume the progress she was making and her breathing will return back to what it was, which by the way was excellent for a 24 weeker.
So while the reintubation was a bit of a disappointment, I am trying to focus on the fact that Veronica still is doing better than most other babies her age. It’s still not easy, but there is comfort in knowing that.
Sunday, May 1, 2011
Tummy Time
Veronica enjoys tummy time. As you may be able to see, she is still on the ventilator. Hopefully they will extubate her tomorrow. They have had to raise the vent settings a little bit which is why they haven't extubated her yet. And while the tube down her throat probably doesn't feel so great, it allows her to breath easily and rest comfortably.
Veronica continues to be fed breast milk - although now its only 1cc every few hours. But anytime she receives a transfusion, which is just about everyday, it delays her feedings as she cannot be fed two hours prior to or after a transfusion. The milk is given to her through a tube in her mouth which goes directly into her stomach (you can see the tube in the photo above, with the orange flag). It will be several more weeks before she can nurse or drink from a bottle. She also gets fluids and nutrients through a central line in her left arm. The IV in her right arm is for the blood transfusions, which as I mentioned earlier, occur almost daily. Part of the reason for that is that they are constantly drawing blood from her and she isn't able to produce as much as they are taking out.
In regards to weight gain, Veronica is steadily gaining. Currently, she weighs 820 grams (1 lb, 13 oz) which is up from 570 grams at birth. Its amazing to see what a difference 9 ounces makes. The ideal is for her to gain 15 - 30 grams (.5 oz - 1 oz) per day.
Tomorrow will be two weeks since the day Veronica was born - and her gestational age is only 26 weeks. Its still hard for me to believe. But day by day, week by week, we will get to where we need to be.
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