Sunday, July 31, 2011
Yesterday Ava's white blood count was high so they suspected she had some sort of infection and started her on antibiotics and drew some cultures. Today those cultures are growing bacteria in her trachea and her blood, so they are going to do a spinal tap to check for meningitis. We should know the results from that later on today. Clinically she is not acting sick. They were able to wean her ventilator settings today so hopefully she can come off soon. She has definitely been on the vent a lot longer than I was anticipating. She has also gone up on her feeds. She is now recieiving 12cc's every three hours. Overall, she is doing well, but we definitely need to figure out what is going on with this infection and get it gone so that she can continue to progress!
Friday, July 29, 2011
Ava has been doing well after her surgery but she is still on the ventilator. This was my biggest concern about the surgery and it is VERY hard for me to see her like that. She hates the vent tube and will gag and cry, it is truly heartbreaking to watch. Hearing your baby cry is hard, but watching your baby cry when no sound is coming out is unbearable. The doctor weaned her ventilator settings and she is tolerating that fine, so we just need to be able to continue to wean her so she can be extubated. Her feeds have been increased to 6ml every three hours. She tolerates it sometimes and doesn't other times. That will just take time. Otherwise she is doing fine, we just REALLY need to get her to start breathing all the time.
Thursday, July 28, 2011
My mom is flying in today and my sister gets here tomorrow. I could not be ANY happier about this. Joseph has the day off so we will be going up there around noon to see our girl, so hopefully I will have some more positive updates later!
Wednesday, July 27, 2011
After that, I went out to wait and the surgery began. The procedure itself only took about 15 minutes and the surgeon came to tell me that everything went perfect with no complications. It took a long time for them to get everthing cleaned up, but I finally got to go back and see her. She was still completely sedated from the anesthesia but she looked good. Right now her heart rate is very high, they think because she is in pain so they are giving her pain medicine and hoping that she is able to calm down. She is really not moving very much so it is sad to think she is in pain :( I will be calling later to check on her and see how she is doing. Thank you all for the prayers!
Tuesday, July 26, 2011
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.
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
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.
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
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.