2 steps forward and 1 step back is usually how it goes....because that way, even though its slow, there is progess.
This week has been the opposite of that....1 step forward and 2 steps back....which means things have gone backwards :( We got the results back from all the tests they conducted.....and let's just say I've been extremely emotionally exhausted, to the point where I didn't even have the energy or willpower to blog about it. My poor baby girl....it just breaks my heart to see everything she has to go through.... I wish so bad that I could've kept her inside, so she doesn't have to suffer so much.
Ova's 32nd birthday was on 11/11/11....we planned a whole family day to celebrate that day, but that morning we got the news.....I woke up to my phone ringing, it was the NNP calling to tell me that they were putting her back on the ventilator. I asked why, what happened?..... she told me that baby Katea had about 6 ABD episodes throughout the night that she wasn't able to self-resolve....and the last one was too severe. She told me that baby stopped breathing and her heart rate plummeted below the 50's and they actually had to pull the nasal IMV out of her nose and bag her for 3 whole minutes to get her to start breathing again. Because of how severe that was, they decided to put her back on the ventilator. Even though her blood gases were still perfect, they took her episodes as a sign that she had given it her all....she had tried so hard and worked so hard to stay off of it, but she was just too tired and couldn't do it anymore. They didn't want to possibly cause her to withdraw or cause more damage by keeping her on after that, she needed a break. She lasted one whole week, which was amazing....but having to go back on the vent was a huge step backwards, and so so bad for her lungs, especially since she's already a chronic baby and diagnosed with chronic lung disease. :( Although I was heart-broken about it, I was glad that she'd finally get to rest a little.
We called to excuse Makai from school that day, and we went out to breakfast as a family. I was so sad and heart-broken at the news of my baby Katea....but I was trying so hard to hide it because it was Ova's special day and I really didn't want to ruin it. After breakfast, we just came home and hung out together, then we took Ova to lunch at Green Papaya....that's his favorite! Lautala was being a little monster at the restaurant.....that, along with me already being emotional, was just too much and I lost it. I actually had to run to the bathroom to cry for a minute and get my composure...then I came back and joined my family....
After lunch we went to the hospital to see baby. This week is the last week our boys will get to see her until she comes home in January, they're closing the hospital for all kids under 14 because of RSV season. Since Lautala was with us, and she's not allowed at all in the NICU, we had to take turns going in. I went in first with my boys.....as soon as I got there, I noticed she had IV's in both her hands and she was getting blood. Her nurse Stacey started explaining how she was doing, and what changes they had made. Obviously she was back on the ventilator, and Stacey said she looked rested and had been doing good since being back on the vent. The NNP came in to talk to me and to answer any questions I had. I asked about all the tests they conducted that morning, what the results were and how my baby was really doing. She told me that the CBC showed that she didn't have any infections, which was good, but her hemaglobin was really really low. She was getting a blood transfusion, and they were actually giving her a double dose. They were pumping 26ml of blood into her little body. I was trippin when they told me that because I was told she only had 2oz. of blood in her whole body, which is only 60ml.....the NNP giggled a little and told me that since she's grown, the amount of blood in her body has gotten bigger...she calculated it out for me and told me that now she has 104ml of blood in her body. So that meant they were giving her a quarter the amount of her blood back. Because of the re-intubation and the blood transfusions, they stopped her feedings....just as a precaution to prevent her from getting NEC (a hole in the intestine) I asked her about the echocardiagram and she told me there were two small holes in her heart that weren't there before. That worried me A LOT! She wasn't sure if they re-opened or if they were never actually closed. She pulled up the reports on her and the person who conducted the x-ray wrote that there was "a significant change in her heart since the last x-ray. The holes were closed in the first x-ray and now they were re-opened. Not a very common occurrence, and not a good thing! :( The good thing, she said, was that they were small and they didn't see any signs of swelling of the heart....she said it could still happen and that they were going to watch it very closely. Another thing they noticed in the echo was that her left ventricle was smaller than normal. She didn't think it was anything too serious and said that the blood transfusion should resolve that issue. The NNP asked me if I had any other questions and I just started crying....she was sweet and got me some tissues and told me she understands how hard it is to get bad news. I told her I just feel like we're taking steps backwards instead of forwards. She said "well, unfortunately this week, you are" but tomorrow is going to be a better day and next week is going to be a better week. The NICU staff truly care about not only the babies they take care of, but us parents as well. I'm grateful that they don't hold anything back. They don't try to cushion anything about my baby's progress, they just tell it to me like it is and then they tell me what they're going to do to try to fix the issues she faces. I can't say enough how grateful I am for them! They also told me that if we wanted, we could stay in the "NICU hotel" that night if we wanted to be close to baby.
The "NICU hotel" consists of 2 rooms just down the hall from the NICU. They are very simple, with a queen size bed, a tv, a bathroom and a breast pump. I took her up on the offer and told her that we would love to stay that night to be close to our baby girl. I was actually excited, thinking it would be a perfect end to our family day and Ova's birthday to spend it there with our kids. But when I went to the front desk to get the key, they had me sign a waiver stating that no kids were allowed in the room. Bummer.
I got the key and went out in the hall to stay with Lautala while Ova took his turn to go inside with the boys to see baby.
They came out at the shift change, when the NICU closes and he told me that Stacey was going to tell the night nurse to let me hold her. I was so excited for that! When we left the hospital, we took Ova to Leatherby's for his birthday dinner. We LOVE that place, and my kids can actually kill their own ice cream dish! haha We had a good time together all day as a family. Ova kept thanking me for the day, and for making his birthday special......we're pretty simple people, all we need or want is food and family and we're good! :)
After Leatherby's, we took the kids home to stay with Tea while we headed back to the hospital. I was excited thinking I was going to be able to hold her, but my excitement was shot down quick when the nurse suggested that I let her rest because she'd been through so much that day. :( I was ok with the vent, and the blood, but I was still worried about the holes they found in her heart.....I had a lot of questions, and I ask a lot of questions. The nurse didn't know how to answer my millions of questions, so she called the NNP again to come and talk to me. I just wanted to know more about the holes they found in her heart, how severe they were, what happens from here, what are the long term effects of the holes, why did they open again if they were already closed? So many questions running through my mind. The NNP explained to me that when babies are in utero, there are two holes in the heart that are always open....since they don't need oxygen and don't breathe while in utero, the holes allow blood and fluid to circulate from the pulmonary artery to the aorta without going to the baby's lungs. When the baby is born, the pressure in the baby's lungs drop and the holes close on their own. In preemies, sometimes becasue of the stress of coming into this world, they don't close on their own and need help. In very very rare cases, they close and later on re-open. My baby girl is that very rare case. The holes are called the PDA (Patent ductus arteriosis) and the PFO (Patent foramen ovale).....the PFO always closes on it's own, it's the PDA that sometimes needs help. I asked why baby Katea's holes re-opened....the NNP couldn't give me a for sure answer, but she did say that it was probably becasue she is fluid sensitive. I asked her what happens if the PDA doesn't close.....the NNP explained that if the PDA stays open, the lungs will begin to overload with too much blood, which in turn can strain the heart because it has to work too hard to carry the blood to the body. That made me think about how they told me that her lungs looked "wet" in her last chest x-ray causing her to need the drug lasics to get rid of the fluid. She told me that the hole is a real possibility as to why her lungs looked so "wet", and also part of the reason she's having such a hard time breathing. She told me there are only two ways to treat an open PDA that won't close.....one way is to start a series of indocin (ibuprofen) which thins the blood and restricts the arteries hoping to force the PDA to close....but the side effects of that method is that it restricts all arteries in the body which could cause problems with the liver, kidneys, etc. The only other option besides indocin is to transfer her up to Primary Children's to have surgery on her heart to close the hole.....but obviosuly surgery has it's own risks and the stress of it alone can cause so many problems. She said she would bring up the issue with the group the next morning in rounds and they would decide what that were going to do to treat it. How scary! So much information to take in at one time, and so overwhelming!
Ova and I stayed with baby Katea until about 2am, and then we went to stay in the "hotel".......about an hour after I fell asleep, I woke up to the phone ringing....it was the NNP again, baby Katea had managed to self-extubate again, requiring another CODE BLUE.....she was laying on her back and turned her head far enough to the side that the tube slipped right out of her throat. OMG. The NNP said she probably was just hungry because they hadn't fed her all day long...she was extremely irritated, flailing her arms and moving her head around when it happened. The NNP just wanted to let me know that that had happened, and to let me know that they reintubated her, started her feeding....which helped her calm down, and that she was stable and sleeping. That makes the 5th time they've had to put the tube down her throat....which they mentioned could mean scarring and damage to her throat and vocal cords. What a horrible day for our little miracle!
I joked with her that it's their fault she pulled the cord out becasue they were starving her.....she can't go without for too long, she's polynesian...she needs her food! hahaha she just laughed with me!
A little bit of good news always comes with the bad......even with her feedings stopped today, she still managed to gain weight. She's now up to 3lbs1oz! Yay!
Baby Katea, reintubated....with the scab on her hand from her blood transfusion IV....finally resting because she was fed! So sorry for the rough days baby girl....you're doing so good and I'm so proud of you!! Keep fighting and hang in there....better days are coming! I.LOVE.YOU!!!