Ava is one week old today. It had definitely been one of the longest weeks of my life. This will probably be pretty short. I am emotionally very exhausted right now so I will do my best.
Ava stabalized on the SiPAP and has been doing much better on it with just a few episodes. This morning she had a head ultrasound to look at her brain and check for any bleeding or abnormalites. She also had an echocardiogram to look at her PDA and determine if it had closed or become smaller. I was praying for good news and unfortunately recieved quite the opposite. I just spoke to the doctor and the PDA is unchanged. Because of this, she will need to have surgery tomorrow. PDA surgery is relatively simple, but obviously it is surgery, on my two pound daugther. And of course she will have to be on a ventilator, which terrifies me.
The head ultrasound showed no bleeding, which is good, but it showed some bright areas on her brain. The doctor explained that this COULD be normal, or it COULD be and indication of Periventricular Leukomlacia. Basically this is damage to the white matter of the brain. The most common result of PVL is cerebral palsy and developmental delays. I am so scared for her brain but I know I have no control over that, and at this point we don't even know if she has it, her brain could be completely normal, and it's a good sign that there is no bleeding.
I am very overwhelmed with all of this right now and truly feel as if I cannot breathe. Please pray for my baby girl. Surgery will be tomorrow afternoon but I don't know what time yet. I will try to update as soon as I can after surgery tomorrow.
Tuesday, July 26, 2011
One Week Old
After such an incredibly rough day yesterday, I was terrified to leave Ava last night. Especially after she pulled a nice little stunt as we were getting up to leave and stopped breathing again. She recovered quicker this time but it was still very scary to watch, it always is. No mother wants to see her baby like that and now I have witnessed both of my sweet babies in this state. It is frustrating beyond belief. I just can't understand why they have to endure so much pain and suffering.
I called to check on Ava when I got home, and every time I was up to pump during the night...every three hours. She was much more stable during the night, still having episodes but fewer and less dramatic. When I just called this morning, she was doing ok, but had already had one episode for her day nurse. The doctor will be rounding soon so hopefully he will call me this morning with the plan for Miss Ava. Because she is a week old, she will also be getting a head ultrasound today to check for any bleeding. This obviously makes me very nervous but we just have to pray for the best, it is nothing that we have any control over. She gets her last dose of Endocin (to close her PDA) this morning so later today they will do a repeat echo to check on that and see if it has closed. So there are a lot of things going on today and I am nervous about every single one of them. I can't tell you how much I am looking forward to the days of learning to eat and grow. They can't come soon enough!
I will update later today with the results from all of the tests she will be having along with what the doctor feels is best for Ava's breathing. I am praying she can hold her own on the SiPap so she can get a little stronger and start moving forward. I also am really praying for her PDA to be closed so that she can move forward with feedings and GROW. She needs to grow to get stronger and to be able to breathe easier. Thank you for all your prayers and positive thoughts you are sending this way, I am definitely feeling them and so is Miss Ava!
I called to check on Ava when I got home, and every time I was up to pump during the night...every three hours. She was much more stable during the night, still having episodes but fewer and less dramatic. When I just called this morning, she was doing ok, but had already had one episode for her day nurse. The doctor will be rounding soon so hopefully he will call me this morning with the plan for Miss Ava. Because she is a week old, she will also be getting a head ultrasound today to check for any bleeding. This obviously makes me very nervous but we just have to pray for the best, it is nothing that we have any control over. She gets her last dose of Endocin (to close her PDA) this morning so later today they will do a repeat echo to check on that and see if it has closed. So there are a lot of things going on today and I am nervous about every single one of them. I can't tell you how much I am looking forward to the days of learning to eat and grow. They can't come soon enough!
I will update later today with the results from all of the tests she will be having along with what the doctor feels is best for Ava's breathing. I am praying she can hold her own on the SiPap so she can get a little stronger and start moving forward. I also am really praying for her PDA to be closed so that she can move forward with feedings and GROW. She needs to grow to get stronger and to be able to breathe easier. Thank you for all your prayers and positive thoughts you are sending this way, I am definitely feeling them and so is Miss Ava!
Monday, July 25, 2011
Two Steps Back
Today has been by far the most difficult day of this journey so far. Usually the doctor calls me at 9:30 to update me on Ava and let me know of any changes that are being made for her care. This morning he didn't call so I assumed all was well but called at 10 to check on her. I was informed that she had many apenic episodes overnight so they decided to move her back to CPAP and see if this helped. I was so upset to hear this news. I just couldn't stop crying. I know all too well that this is the NICU rollercoaster but it doesn't make it ANY easier to see her taking steps backwards.
I went to go see Ava at about 12:15. When I got there her nurse told me that she was continuing to struggle so they decided to put her on SiPAP. It's very much like CPAP but instead of just a continuous pressure, it also gives her breaths. The doctor talked to me a little bit and said that he was starting a new medicine to help her remember to breathe. He explained that these were the last few things they could do before they ended up intubating her. He thinks that the effects of the surfactant are wearing off and this is why she is having a hard time. I, of course broke down. I don't want this for her, I want her to move forward.
The RT's came to switch her to the SiPAP machine. As they were changing everything over, Ava completely stopped breathing. They tried stimulating her, giving her oxygen. Nothing worked. They ended up having to manually bag her and it still took forever to get her back up. Her oxygen saturations dropped to 17 and her heartrate was in the 50's. It was absolutely terrifying to watch as they worked on my baby girl and I could do nothing.
I am struggling with many emotions right now. Mostly anger and frustrating that I am doing this again. It is completely surreal to me. Right now we need prayers for Ava's PDA to close, for her breathing to get easier and for the meds she is on not to cause any negative side effects. If you can spare a couple extra prayers for me to have strength to get through this. Today I feel very weak. I have cried most of the day. I feel like I am falling apart inside.
I went to go see Ava at about 12:15. When I got there her nurse told me that she was continuing to struggle so they decided to put her on SiPAP. It's very much like CPAP but instead of just a continuous pressure, it also gives her breaths. The doctor talked to me a little bit and said that he was starting a new medicine to help her remember to breathe. He explained that these were the last few things they could do before they ended up intubating her. He thinks that the effects of the surfactant are wearing off and this is why she is having a hard time. I, of course broke down. I don't want this for her, I want her to move forward.
The RT's came to switch her to the SiPAP machine. As they were changing everything over, Ava completely stopped breathing. They tried stimulating her, giving her oxygen. Nothing worked. They ended up having to manually bag her and it still took forever to get her back up. Her oxygen saturations dropped to 17 and her heartrate was in the 50's. It was absolutely terrifying to watch as they worked on my baby girl and I could do nothing.
I am struggling with many emotions right now. Mostly anger and frustrating that I am doing this again. It is completely surreal to me. Right now we need prayers for Ava's PDA to close, for her breathing to get easier and for the meds she is on not to cause any negative side effects. If you can spare a couple extra prayers for me to have strength to get through this. Today I feel very weak. I have cried most of the day. I feel like I am falling apart inside.
Welcome to this World
I promised I was going to blog and then the hospital internet blocked all blogging websites! How frustrating! So I will try to start where I left off without making this too long, drawn out and boring. After I stopped the Magnesium Sulfate, I was moved up to antepartum. I only lasted about 4 hours up there before my contractions came back full force. I was given a shot of terbutaline, which seemed to stop the contractions, but a few minutes later, the baby's heart rate decellerated for 3 minutes. It was very scary. The nurse came in and had me flip from one side to another and then my room filled with nurses and they rushed me back down to L&D. By that time the baby's hearrate was stable but I was terrified. The doctor came and checked me and I had progressed to 3cm with a buldging bag of waters. At this point I had an u/s to check the presentation of the baby. The baby was head down so if I really went into labor, I was going to have a vaginal birth. I was started back on Magnesium Sulfate. A perinatologist came by and made the decision to stop the Mag and start me on a drug called Endocin. It is not widely used to prevent premature labor but it was a miracle drug and it held me over for 3 days. The drug can only be used for 72 hours as it has side effects on the baby and mom after that amount of time.
During all this time, my INCREDIBLE friend Kes was there by my side. Massaging me, giving me bed baths, tending to my EVERY need. She was amazing and I truly don't know how I would have made it through that experience without her. My other amazing friend, Sarah was at home with Travis, filling such an important roll. I could never thank these two friends enough.
After my last dose of Endocin, I was very nervous. I had progressed too far for them to continue any type of drugs to stop my labor. So then it was just truly a waiting game. My last dose was at 6pm on Monday, July 18th. I felt very strongly in my heart that I would be having a baby that next day. At 3am, things started to get serious. They baby was no longer tolerating contractions and I had to stay on my side. By morning, I felt as though I may be leaking fluid. I was also in a lot of pain, not just from contractions, but from the baby's movements. They were very low, strong, and painful. I had another ultrasound to check the baby's presentation and this time, baby was breech. I was devastated because I knew this meant that more than likely I would end up with a c-section. My doctor came by to check me. He was expecting to encouter the buldging bag of waters, but instead, he felt the baby's bottom, and discovered that my membranes had ruptured (water had broken). It was then quickly decided to take my for a c-section immediately.
Kes called Joseph immediately and he rushed to the hospital. She also called my mom and I texted my sister. I was beyond terrified. Everything after that happened very quickly. It was about 25 minutes later that I was laying numb on an OR table, about to have my baby cut out of me. Joseph made it JUST in time. Everyone was excited that this was a surprise baby because we were about to find out if we were having a boy or a girl! Finally after much tugging, pulling and suctioning, our tiny baby GIRL came into this world. I could not believe my ears when I heard, "It's a girl!" It truly was one of the scariest, but best moments of my life. Next, I heard her screaming, and that was music to my ears! Ava Belle Arledge came into this world at 10:08am on July 19, 2011, SCREAMING! Her apgars were 9 and 9! Absolutely incredible!
Ava is now 6 days old. She has done spectactular so far. She was moved from CPAP to a high flow cannula at only 2 days old. Our first setback occured when she was 3 days old. They discovered she had a very large PDA (Patent Ductus Arterosis). It is a valve very near the heart that needs to close when a baby is born but often does not with preemies. It creates problems as their body has a hard time pumping blood to the rest of the body and the lungs recieve too much blood. She started a 36 hour course of, ironically, the same drug that was used to stop my labor. Unfortunately it did not close the PDA so she is now on her second round of Endocin. We are praying it works because the next step would be surgery and obviously we do not want that.
In regards to breathing, Ava is on 3 liters of high flow. She has not required ANY oxygen at all! It is amazing! She is not getting any breastmilk right now because of the medicine she is on, but I am pumping every 2-3 hours and have a HUGE stash already so hopefully she starts to eat soon! She is absolutely precious and so much calmer than her brother! I am still over the moon that I have a daughter!
Coming home from the hospital was hard for me. Travis needs me but so does Ava and I have never felt so torn in my life. I want to be two places at once and it is impossible. It is going to take a while to adjust to life with a baby in the NICU again, while having a toddler at home. For now, Sarah is still here and my mom is getting here Thursday, so we will have help for a while, but I am just not sure what we will do after that. It is going to be a long road ahead and I just pray that Ava continues to do so well and comes home to us sooner rather than later!
Thursday, July 14, 2011
Miracle #2
Well, I am determined to start blogging again -or for the first time really- whatever you want to call it. I really regretted not blogging very much when Travis was in the NICU and although I remember some of the journey, a lot has been forgotten as well. I don't know where this new journey is going to lead us and quite honestly I hope this blog is a very boring update of my life in this bed for the next 10 weeks, but either way, I want to be able to remember it.
So as everyone knows, Joseph and I found out we were pregnant with our second little miracle baby on February 3rd. After having surgery to repair my septate uterus, I was hopeful that a full term pregnancy would be in my future. But I would be lying if I didn't tell you that I have been terrified every step of this journey. This time around I was being followed closer by high risk docs and that was giving me some peace of mind. But every little off feeling would cause me to be sticken with fear and all the what ifs.
On Monday evenning (July 11, 2011) I started to have some cramping, increased braxton hicks and thought I may have lost part of my mucous plug (sorry if that is too much info). I had a scheduled appointment with my perinatologist the following afternoon so I figured I could wait it out until then, after all, I had been having what seemed like millions of contractions since 10 weeks into my pregnancy. Tuesday seemed to drag on forever. This was the first appointment that Joseph got to go with me to because we had my cousin, Grace with us so she was able to stay home with Travis. First they did the abdominal u/s to check on the baby's growth which was perfect. The baby was sucking his/her thumb and was SO adorable. Head down, but down VERY low. For the transvaginal u/s the tech had the doctor come in while she did it. I have seen a lot of ultrasounds and I know exactly what to look for. The moment I saw what was on that screen, I put my hand up over my eyes and tears began to fall. I KNEW it was bad. After they took a few measurments, she put the u/s back and I said to the doctor, "I already know it is bad." She said, "Yes, why don't you sit up so we can talk about what is going on here." That is when we found out that my cervix was open, about 1.5 cm dilated and my doctor wanted me to be admitted to L&D until at LEAST 28 weeks if I made it that far.
We hugged a lot and many many tears fell. I was completely terrified and not wanting to do this again. We called family and tried to figure out what to do with Travis duing this time. Thankfully my amazing friend Sarah who didn't have any commitments at home was able to fly in the next morning so she can be with Travis. I got admitted and after a few hours of monitoring, the decision was made to start me on magnesium sulfate because my contractions were coming pretty regularly (about 5 mins apart). That stuff is about as fun as you hear about it being. Makes you feel very hot, and fluish. My contractions kept up for quite some time but yesterday was a pretty calm day. Sarah arrived and Joe brought her and Travis and Grace up here until he got off work around 4. I also had a friend, Meg come visit so yesterday was a good day with lots of company to keep my spirits up. Today Kes is coming and that will help a lot too.
I have recieived my two steroid shots to mature the baby's lungs and my contractions have been very calm all day so they will probably stop the magnesium sometime today. From there on out it is just a wait and see. Tomorrow I will be 26 weeks, so every day and every week inside is better for the baby. So far I have been monitored 24/7 and baby has been great, very active, getting hiccups all the time. So that is where we stand right now. Wait and see. We have been here before and I am just hoping that my body can hold out a few more weeks, so this baby can be born healthy.
So as everyone knows, Joseph and I found out we were pregnant with our second little miracle baby on February 3rd. After having surgery to repair my septate uterus, I was hopeful that a full term pregnancy would be in my future. But I would be lying if I didn't tell you that I have been terrified every step of this journey. This time around I was being followed closer by high risk docs and that was giving me some peace of mind. But every little off feeling would cause me to be sticken with fear and all the what ifs.
On Monday evenning (July 11, 2011) I started to have some cramping, increased braxton hicks and thought I may have lost part of my mucous plug (sorry if that is too much info). I had a scheduled appointment with my perinatologist the following afternoon so I figured I could wait it out until then, after all, I had been having what seemed like millions of contractions since 10 weeks into my pregnancy. Tuesday seemed to drag on forever. This was the first appointment that Joseph got to go with me to because we had my cousin, Grace with us so she was able to stay home with Travis. First they did the abdominal u/s to check on the baby's growth which was perfect. The baby was sucking his/her thumb and was SO adorable. Head down, but down VERY low. For the transvaginal u/s the tech had the doctor come in while she did it. I have seen a lot of ultrasounds and I know exactly what to look for. The moment I saw what was on that screen, I put my hand up over my eyes and tears began to fall. I KNEW it was bad. After they took a few measurments, she put the u/s back and I said to the doctor, "I already know it is bad." She said, "Yes, why don't you sit up so we can talk about what is going on here." That is when we found out that my cervix was open, about 1.5 cm dilated and my doctor wanted me to be admitted to L&D until at LEAST 28 weeks if I made it that far.
We hugged a lot and many many tears fell. I was completely terrified and not wanting to do this again. We called family and tried to figure out what to do with Travis duing this time. Thankfully my amazing friend Sarah who didn't have any commitments at home was able to fly in the next morning so she can be with Travis. I got admitted and after a few hours of monitoring, the decision was made to start me on magnesium sulfate because my contractions were coming pretty regularly (about 5 mins apart). That stuff is about as fun as you hear about it being. Makes you feel very hot, and fluish. My contractions kept up for quite some time but yesterday was a pretty calm day. Sarah arrived and Joe brought her and Travis and Grace up here until he got off work around 4. I also had a friend, Meg come visit so yesterday was a good day with lots of company to keep my spirits up. Today Kes is coming and that will help a lot too.
I have recieived my two steroid shots to mature the baby's lungs and my contractions have been very calm all day so they will probably stop the magnesium sometime today. From there on out it is just a wait and see. Tomorrow I will be 26 weeks, so every day and every week inside is better for the baby. So far I have been monitored 24/7 and baby has been great, very active, getting hiccups all the time. So that is where we stand right now. Wait and see. We have been here before and I am just hoping that my body can hold out a few more weeks, so this baby can be born healthy.
Monday, June 22, 2009
It's been a while!
To any of you who actually check this blog... I apologize!! I started it with the intentions of keeping up with it and obviously I have slacked a lot! Sooo much has happend since my last post...umm...3 months ago! Travis is doing very well. He is off oxygen while he is awake now and the feeding tube has been out for almost 3 weeks! A huge accomplishment and although he is eating incredibly well (you know...for Travis that is) he is now throwing up a lot. When I say a lot, I mean I feed him a 4 oz bottle and he throws up 3-4oz. In two weeks he lost 4 oz. This was pretty upsetting. We have tried a third type of formula and a new reflux med all to no avail so far. He continues to vomit at least 40% of what he takes in. Tomorrow we see GI so hopefully we can get some more ideas on how to help him.
Also since my last post, Travis has learned to sit up completely on his own. He has achieved many many milestones and recently had his 6 month progress report done by his developmental specialist who has been seeing him once a week for the past 6 months. Travis has made unbelieveable progress in the last couple months and is evaluated at or above his adjusted age in almost every area! How amazing is that!?
We have made 3 trips to Redding since my last post. This last weekend we surprised my dad for Father's day and Joe, Travis, my Dad and myself went out to the lake all day on Saturday. The weather could have been better but we'll take it! Travis does really well on our trips home. He is a great traveller and usually sleeps in the car. He is such a happy baby these days. Even when he is crying or cranky you can get a smile out of him. He just loves people and is happy with who ever is holding him. He is extremely social and open to meeting new people. He has such a great attitude (most of the time)!
I cannot believe that my little baby turns ONE next month! We are planning his big birthday party out at Whiskeytown lake. I am so amazed with how far he has come and honestly never imagined that he would be doing this great so soon! But I have to run, he is yelling for me!!
Also since my last post, Travis has learned to sit up completely on his own. He has achieved many many milestones and recently had his 6 month progress report done by his developmental specialist who has been seeing him once a week for the past 6 months. Travis has made unbelieveable progress in the last couple months and is evaluated at or above his adjusted age in almost every area! How amazing is that!?
We have made 3 trips to Redding since my last post. This last weekend we surprised my dad for Father's day and Joe, Travis, my Dad and myself went out to the lake all day on Saturday. The weather could have been better but we'll take it! Travis does really well on our trips home. He is a great traveller and usually sleeps in the car. He is such a happy baby these days. Even when he is crying or cranky you can get a smile out of him. He just loves people and is happy with who ever is holding him. He is extremely social and open to meeting new people. He has such a great attitude (most of the time)!
I cannot believe that my little baby turns ONE next month! We are planning his big birthday party out at Whiskeytown lake. I am so amazed with how far he has come and honestly never imagined that he would be doing this great so soon! But I have to run, he is yelling for me!!
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