Again I apologize for keeping people waiting for a post, but honestly like I have said previously this NICU process is very up and down and it is extremely hard to write everything and keep up. Olivia is doing wonderful. She is up to 3lb and 13oz without any fortifiers in her milk, I must pat myself on the back for this one all of her nurses have said that I must have amazing breast milk. It is very rare for preemies to be able to gain weight with straight breast milk. They have tried to fortify my milk 4 times by adding formula and other items but every time they attempt this Olivia fills up with air and they are forced to hold multiple feedings until her belly comes back down, which completely defeats the purpose of adding more calories. So she will remain on straight breast milk so long as she is gaining weight. I am so grateful that I am able to provide her with the nutrition that she so desperately needs right now. The doctor said he cringes at the thought of her being on formula some babies tolerate this just fine but my Olivia has a very sensitive belly and really struggles with anything but home grown Mommy milk. It has been very frustrating and difficult to pump for 9 weeks straight and many times I wanted to give up and just give her formula but I am so grateful I have stuck with it and she is doing so well.
Her last dose of antibiotics is tomorrow. We are so excited to get the PIC Line out of her arm. She currently has 9 cables this makes it extremely difficult to change her or hold her. Once they remove the pic line we will loose at least 4 of these cables. Also she will be able to wear clothes again. They try to sort of dress her now but we have to leave that right arm out so we have had to get creative. My little daughter is rocking the off the shoulder style all ready lol, so fashionable. Some more great news about this PIC line coming out is that her Daddy and I will be able to give her, her first real bath on Christmas day. What a present that will be I cant wait. We will deff take lots of pictures and videos to share.
Olivia has officially graduated from her incubator into a big girl crib. Something about having her in a crib just makes it so real for me. This tiny gorgeous little girl is all mine it is so exciting and so frightening all at the same time. Hard to explain but Im sure you other Moms know what Im talking about. She officially knows her Mommy and Daddy and we are getting tons of smiles. Unfortunately every time we try and capture a picture we just miss it. Maybe we can catch a few on video tomorrow.
I feel like this post is a bit of a rambling but I have so much info to pass on. She is now taking some feedings via mouth. She is doing wonderful at breast feeding. This is very taxing on her tiny body so we are starting with 2 breast feeding sessions a shift. She has done very well but I can tell it completely wears her out. Now the bottle on the other hand she has pretty much mastered. She is taking 30ML which is considered a full feeding for her size right now by bottle at least 2 feedings a day with no problem. Now keep in mind she still has a feeding tube down her nose that goes straight to her belly so swallowing can be a bit difficult but she is doing a wonderful job. They will not remove the feeding tube until she is able to take all of her feedings via mouth. This is a work in progress because she is so small we have to start slow so she doesnt loose too much weight in the process but we are well on our way.
I hope everyone reading this has a wonderful Christmas. I have honestly been a bit of a grinch and not in the Christmas spirit, but I am forever grateful for my family and friends for getting me threw this very rough time I cant thank you all enough. Santa is coming around to visit all the babies in the NICU on Christmas we will deff capture this and are also very thankful for the wonderful staff that is taking care of my baby girl, they have all been amazing to us and love Olivia so much. One last thing before I sign off Stacy one of Olivia's nurses that had her the first 5 days of life and continues to watch her very frequently has grown very attached to my sweet girl and now refuses to draw her blood she makes another nurse do it lol also Olivia is due for her 2 month shots (can you believe she is 9 weeks old today wow) and Stacy said yesterday shhhh guys we just forgot her vaccines today right "wink wink" she really did not want to poke my girl, I just think it is so sweet that her and Stacy have such a close bond. These nurses are truly a blessing and have such a tough job but we are so grateful for all of them especially Stacy she is very special to us and will remain a good friend for a very long time.
Monday, December 24, 2012
Tuesday, December 11, 2012
Frustrated
Usually with me no news is bad news, but today unfortunately I need some writing therapy and hoping I will feel much better after I get this all out in black and white.
Starting last night Olivia began having a descended belly this is very concerning and usually a sign of infection, but if you recall my baby girl is on a strong dose of antibiotics due to her recent UTI infection. That being said this descended belly was even more worrisome. They stopped her feedings as of 9 pm last night to see if her belly would possibly self resolve. Well no such luck. This morning it was still pretty full and very firm. Trying to remain optimistic her Daddy and I were hoping it was just gas. Because of their concern they ran blood work again last night. Unfortunately this came back this morning with some concerning numbers. Her white blood cell count dropped drastically. This can also be an indication of infection. At rounds this morning the doctor decided it would be the best decision to perform the spinal tap again. Wow again I go threw the agony of begrudgingly signing the consent form for this terrible procedure.
After accepting the fact that they were going to go threw with this. I decided my little angel needed some Mommy snuggling time. The nurse got her out and she fell fast asleep skin to skin on me for a good 2 hours. Such a sweet girl and so content despite the fact that she has had nothing to eat all day and night.
They performed the spinal tap late this afternoon and again were unsuccessful. After 4 attempts by 2 different nurse practitioner's they were unable to get any spinal fluid. This is extremely unusual but has happened before. The hardest part about this is now we are still left with a big fat ? and have no idea what is going on with my baby girl. They switched her to the stronger antibiotic and have decided to run this for an additional week. The problem with this is her tiny veins have already had IV'S for a week and are completely worn out. The only other option to giver her medication is another PIC line. She had one of these in the past and it is an extremely risky and scary procedure to get it in the right place. They go threw a main vein that goes right next to the heart. They do have an ex ray on during the entire procedure, but again another consent has to be signed and Im a nervous wreck. I just feel so frustrated and like she was doing so well with all her breastfeeding and gaining weight and now we are stuck in this limbo unable to feed her and watching her loose weight. Enough of my ranting and raving I will defiantly write again and hopefully with some better news in the near future.
Starting last night Olivia began having a descended belly this is very concerning and usually a sign of infection, but if you recall my baby girl is on a strong dose of antibiotics due to her recent UTI infection. That being said this descended belly was even more worrisome. They stopped her feedings as of 9 pm last night to see if her belly would possibly self resolve. Well no such luck. This morning it was still pretty full and very firm. Trying to remain optimistic her Daddy and I were hoping it was just gas. Because of their concern they ran blood work again last night. Unfortunately this came back this morning with some concerning numbers. Her white blood cell count dropped drastically. This can also be an indication of infection. At rounds this morning the doctor decided it would be the best decision to perform the spinal tap again. Wow again I go threw the agony of begrudgingly signing the consent form for this terrible procedure.
After accepting the fact that they were going to go threw with this. I decided my little angel needed some Mommy snuggling time. The nurse got her out and she fell fast asleep skin to skin on me for a good 2 hours. Such a sweet girl and so content despite the fact that she has had nothing to eat all day and night.
They performed the spinal tap late this afternoon and again were unsuccessful. After 4 attempts by 2 different nurse practitioner's they were unable to get any spinal fluid. This is extremely unusual but has happened before. The hardest part about this is now we are still left with a big fat ? and have no idea what is going on with my baby girl. They switched her to the stronger antibiotic and have decided to run this for an additional week. The problem with this is her tiny veins have already had IV'S for a week and are completely worn out. The only other option to giver her medication is another PIC line. She had one of these in the past and it is an extremely risky and scary procedure to get it in the right place. They go threw a main vein that goes right next to the heart. They do have an ex ray on during the entire procedure, but again another consent has to be signed and Im a nervous wreck. I just feel so frustrated and like she was doing so well with all her breastfeeding and gaining weight and now we are stuck in this limbo unable to feed her and watching her loose weight. Enough of my ranting and raving I will defiantly write again and hopefully with some better news in the near future.
Saturday, December 8, 2012
2 Steps Forward 1 Step Back
I wish I could say that it has been so long since I posted because I was out holiday shopping or doing something fun and exciting, but unfortunately that is not the case I have spent most of last week at the hospital.
Olivia had a bit of a set back this week and I think its safe to say I officially had my first real melt down since all of this happened. On Tuesday evening we went to do Olivia's cares at 9pm. She was so happy and so active. We gave non-nutritive breast feeding another try and she did amazing. She latched on and was sucking for a good 15 minutes. One of the hardest things for preemies is to remember to breath while they are nursing. Happy to say that Olivia is way ahead of a her adjusted age and would take 6 good sucks then take a break and take a few nice deep breathes. All in all it was such a rewarding night her Daddy and I left that night in such high spirits. With all of this in mind that is why the phone call the following morning was even more of a shock to us.
At 7am the nurse practitioner called saying she had some bad news. Before she could say another word I burst into tears. I think as a Mother you always hope for the best but prepare yourself for the worst. At 4 am yes 4am Im telling you my daughter has a thing with this time of day, everything that has happened to us has always been at 4 am almost on the dot. She began to have severe episodes of desaturations in her breathing and her heart rate was dropping rapidly. Luckily she had one of her primary care nurses that I absolutely adore and had her the first 5 days of life so she knows her very well. She knew that Olivia was acting very out of character and immediately called the doctor. First things first they got her stable and turned her oxygen back up to what it was weeks ago. They discontinued her feedings and began drawing blood and urine samples. When a preemie begins regressing in breathing this is usually a sign of an infection.
After hearing all of this news I immediately jumped in my car and got to the hospital as fast as possible.
After taking one look at her I knew something was wrong. Her eyes were puffy and she was very lethargic. Standing next to her isolate for no more then 5 minutes another episode began. Her alarms were like nails on a chalk board. I think the sounds of them will haunt me for a very long time. She was starting to turn blue and with 4 nurses around her. When these episodes have happened in the past she will recover very quickly as soon as a nurse grabs her foot or rubs her back. This episode was quite different. Looking over the shoulders of the woman trying to help my baby girl she was not recovering. As soon as they started to pull out the equipment for full resuscitation I ran out of the room completely hysterical. I cant explain what I was feeling other then complete helplessness and hysteria. It is safe to say I think I had my first complete melt down. After she was stable her Dad convinced me to go back in and that she was looking much better. He was right I was relieved to see her nice and pink. Wednesday turned into a very long day. Now it was a waiting game to see what all of the tests came back with. They started her on a very strong antibiotic. It is standard practice in the NICU to assume a baby has an infection until they prove otherwise. Their immune systems are very weak.
The doctor came in and spoke to us about what was and could be going on. Also he need a written consent from us to perform a spinal tap. A decision I felt uncomfortable with from the get go. They do a spinal tap to determine if she had meningitis. I felt like they were jumping the gun and should wait at least one day to see if anything else came back before putting her threw this stressful procedure. As a Mother though I want nothing more then to put my complete trust in her doctors and nurses that being said a begrudgingly agreed and signed the consent. I of course left minutes before they were going to perform the procedure. Because she is so small pain medicine is not an option. They did give her a local numbing medicine and a light dose of sedation. They poked my poor girl 3 times looking for spinal fluid and were unsuccessful. They said this is highly unusual. After hearing word of this I asked them to revoke the right to try this again. I really should have trusted my mother intuition on this but live and learn. I returned to the hospital and Olivia was still far from her active happy self. The doctors assured me that they would not try the spinal tap again until tomorrow.
The following morning her Dad and I made sure we were at the hospital for the rounds. They have rounds on every baby every day. A meeting with all of the staff that is caring for her. The doctor said Mom, Dad I have some good news. It was music to my ears after a day like yesterday I really needed some good news. Olivia has a urinary tract infection and we believe this is what is causing her to be in distress. The best news is this is easily treatable with antibiotics and because she has been on them since yesterday we got a good jump on it. This also means it will not be necessary to perform another spinal tap. It felt as if a weight had been lifted and I could finally stop crying and pull myself together. Just knowing what was wrong and that it was treatable was a huge relief.
She has now been on antibiotics for 3 days and is feeling much better other then being hungry. Because they pulled her feedings for a day and a half they have to start introducing it to her system very slowly and Olivia is just like her Momma we get very grumpy when hungry. The poor thing just needs some extra love and thank goodness for her pacifier. She has taken a small step backwards with her oxygen needs and of course her feedings but we are hoping to be back on track by early next week.
Olivia had a bit of a set back this week and I think its safe to say I officially had my first real melt down since all of this happened. On Tuesday evening we went to do Olivia's cares at 9pm. She was so happy and so active. We gave non-nutritive breast feeding another try and she did amazing. She latched on and was sucking for a good 15 minutes. One of the hardest things for preemies is to remember to breath while they are nursing. Happy to say that Olivia is way ahead of a her adjusted age and would take 6 good sucks then take a break and take a few nice deep breathes. All in all it was such a rewarding night her Daddy and I left that night in such high spirits. With all of this in mind that is why the phone call the following morning was even more of a shock to us.
At 7am the nurse practitioner called saying she had some bad news. Before she could say another word I burst into tears. I think as a Mother you always hope for the best but prepare yourself for the worst. At 4 am yes 4am Im telling you my daughter has a thing with this time of day, everything that has happened to us has always been at 4 am almost on the dot. She began to have severe episodes of desaturations in her breathing and her heart rate was dropping rapidly. Luckily she had one of her primary care nurses that I absolutely adore and had her the first 5 days of life so she knows her very well. She knew that Olivia was acting very out of character and immediately called the doctor. First things first they got her stable and turned her oxygen back up to what it was weeks ago. They discontinued her feedings and began drawing blood and urine samples. When a preemie begins regressing in breathing this is usually a sign of an infection.
After hearing all of this news I immediately jumped in my car and got to the hospital as fast as possible.
After taking one look at her I knew something was wrong. Her eyes were puffy and she was very lethargic. Standing next to her isolate for no more then 5 minutes another episode began. Her alarms were like nails on a chalk board. I think the sounds of them will haunt me for a very long time. She was starting to turn blue and with 4 nurses around her. When these episodes have happened in the past she will recover very quickly as soon as a nurse grabs her foot or rubs her back. This episode was quite different. Looking over the shoulders of the woman trying to help my baby girl she was not recovering. As soon as they started to pull out the equipment for full resuscitation I ran out of the room completely hysterical. I cant explain what I was feeling other then complete helplessness and hysteria. It is safe to say I think I had my first complete melt down. After she was stable her Dad convinced me to go back in and that she was looking much better. He was right I was relieved to see her nice and pink. Wednesday turned into a very long day. Now it was a waiting game to see what all of the tests came back with. They started her on a very strong antibiotic. It is standard practice in the NICU to assume a baby has an infection until they prove otherwise. Their immune systems are very weak.
The doctor came in and spoke to us about what was and could be going on. Also he need a written consent from us to perform a spinal tap. A decision I felt uncomfortable with from the get go. They do a spinal tap to determine if she had meningitis. I felt like they were jumping the gun and should wait at least one day to see if anything else came back before putting her threw this stressful procedure. As a Mother though I want nothing more then to put my complete trust in her doctors and nurses that being said a begrudgingly agreed and signed the consent. I of course left minutes before they were going to perform the procedure. Because she is so small pain medicine is not an option. They did give her a local numbing medicine and a light dose of sedation. They poked my poor girl 3 times looking for spinal fluid and were unsuccessful. They said this is highly unusual. After hearing word of this I asked them to revoke the right to try this again. I really should have trusted my mother intuition on this but live and learn. I returned to the hospital and Olivia was still far from her active happy self. The doctors assured me that they would not try the spinal tap again until tomorrow.
The following morning her Dad and I made sure we were at the hospital for the rounds. They have rounds on every baby every day. A meeting with all of the staff that is caring for her. The doctor said Mom, Dad I have some good news. It was music to my ears after a day like yesterday I really needed some good news. Olivia has a urinary tract infection and we believe this is what is causing her to be in distress. The best news is this is easily treatable with antibiotics and because she has been on them since yesterday we got a good jump on it. This also means it will not be necessary to perform another spinal tap. It felt as if a weight had been lifted and I could finally stop crying and pull myself together. Just knowing what was wrong and that it was treatable was a huge relief.
She has now been on antibiotics for 3 days and is feeling much better other then being hungry. Because they pulled her feedings for a day and a half they have to start introducing it to her system very slowly and Olivia is just like her Momma we get very grumpy when hungry. The poor thing just needs some extra love and thank goodness for her pacifier. She has taken a small step backwards with her oxygen needs and of course her feedings but we are hoping to be back on track by early next week.
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