Surgery complete!

Josh and I arrived at the hospital around 9 in the morning. They had her hooked up to an IV to get her hydrated, and had withheld food since 3 in the morning. She was fussy and wide awake just like last time. They told me she would be going in about 10:30. About 10:15 the nurse came in and said they would be up to take her in about half an hour. Josh decided to go down to get a coffee while he was waiting and literally 5 minutes after he left they came up to get her. The male nurse who works with the OR team came up for her. He was a real funny guy, who helped lighten the mood. He told me he was partial to girls because he had four of them, and he loved wheeling the babies down to the OR because everyone oohs and aahs at the them as they're walking down ( : I was going to wait in the NICU waiting room, but he told me that I could walk down with them to the pre-op room. I was hoping Josh would show back up before we went down there, because I knew he really wanted to give her a kiss before she went in. We walked through this maze of corridors and restricted areas before we arrived in the pre-op area. I tell you it is a completely different environment down there. It is so hectic with all the nurses and doctors and patients. The NICU is always so peaceful and quiet. Dr. Wilson was the neurosurgeon who was going to be performing the VP shunt operation. Dr. D'angelo would have been who have done it if she had undergone the surgery the previous Thursday. Dr. Wilson was a sweetheart, who did everything possible to put my mind at ease. He reassured me that he would have made the exact same decision that Dr. D'angelo did in deciding not to do the surgery last week. He said that her fontanelle still felt fairly normal, and that even her head size going up doesn't always mean there is a problem, but they ultimately rely on what the catscan shows them, and it showed a definate increased dialation of the ventricles. The anesthegiologist came in and talked with me for awhile about all the risks, and said that since she is prones to having de-sats, that they were going to give her what is essentially a shot of caffeine in her IV. It will keep her from being overly sleepy from anesthesia. The downside to this is it leaves them really jittery. The OR was so backed up I was in the pre-op holding room with her for about an hour. I had my phone but couldn't text Josh because the OR is located in the basement of the hospital and I had no service. I was hoping someone might send him down to wait with me. Finally it was time for her to go in, I kissed her goodbye and they wheeled her off. The nurse told me she would come in the wating room to get me when she was finished in surgery, and they got her all situated back in her room.

I came upstairs and found Josh in the waiting room, and explained why it took so long. He was really upset because he didn't get to be with her in pre-op. He came back to the room minutes after we went down and asked the nurse practitioner if he could come and see her. She said no because it's authorized access only, he than asked if she could walk him down and she said no. He said she was kind of rude to him, which I found surprising because she has been nothing but sweet to me. We decided to go to a late breakfast because we were hungry, and I knew I would go nuts waiting around. The nurse said she would call us if anything went wrong. We came back to the waiting room after breakfast, and at this point it had been about an hour. We waited another 45 minutes, and I was starting to get worried. Josh said I bet you anything she's in the room and they forgot to tell us because that seems to be the norm around this hospital. I said alright lets go to her room and see. Sure enough she was in there, and the nurse was cheking her out. I asked if she wanted us to leave until she was done, but she said we could stay. I asked her how it went and how she was doing, and she told me everything went smoothly and she is doing great. As soon as she woke up from the general anesthesia she was off the ventilator. The nurse practitioner came in to tell me that Dr. Wilson wanted her to reassure me that the surgery went perfect, it couldn't have gone any better. The neonatologist came in and told me she looked great, and had good bowel sounds, which meant they could start her feeding within a couple of hours. They had originally predicted she wouldn't be able to eat until the next morning, so this was great news. He ordered some morphine for her pain. You could tell she was pretty uncomfortable she was wiggling and fussing, as soon as the nurse gave it to her she immediately relaxed. Josh asked when she thought she might come home. She told us to look at it in terms of goals not dates. She has to go a whole week without a de-sat, be weaned off the oxygen, and drink a bottle at every feeding. The oxygen goal was pretty much met, but after the surgery they had her back up to 75% oxygen, because she couldn't keep her levels. I am hoping this is because of being sleepy from the anesthesia, I would hate to see her regress after all the progress she made. They also mentioned that she should meet her goals a little faster because she probably will start feeling better now that she won't have any fluid putting pressure on her brain. So all in all she seems to be on the right track to coming home. I have to add that the shunt didn't look as bad as I thought it would, but it is weird that you can actually see the tube that goes into her abdomen because her skin is so thin. Below is a picture of her, and I put arrows where you can see the tube:

Here is where the shunt went in

Lilah recovering ( :

Surgery Rescheduled

Talk about a roller coaster ride. They have now decided that she does indeed need a shunt and scheduled her for surgery tomorrow morning. The past couple days she has been doing really good, taking her feeds well and keeping her oxygen levels. In fact today she was off actual oxygen, just had a little blow by air. They were planning on taking the nose canulas off tonight to see how she does. I am so excited to see my baby without those awful things in her nose. Her head size had increased slightly. I didn't notice too much in person, but when I looked over pictures I had taken today. I could definately see a difference. Kat and Kristin, who hadn't seen her in awhile noticed it too. You can see in the pictures below how bulged out her head is in the front.







































This had been a cause of concern for me in the past couple of days, but nobody seemed to think she was in need of immediate surgery or anything. When I went to visit Saturday night, the nurse on call said they were going to give her a cat scan in the morning to check on things. The next day I happened to get there right when they were about to wheel her down for the scan, so I waited upstairs with Velle while she went down. She was back within 20 minutes, and the nurse told me they were going to give the results to the neurologist and take it from there. This morning, when I arrived with Kristin and Kat, they were in the middle of switching nurses, so it took awhile for someone to come in. I asked her if they knew the results of the cat scan, and she seemed confused for a second than said hold on I'll check on that. She came back about a half hour later and said the ventricles were larger, but no surgery is scheduled for this time. I drove back home, and I was there for about an hour, when one of the nurses who works with the neurosurgeons called me and said they decided she needed the surgery, and they had scheduled it for tomorrow morning at 10:30 am. She asked if I was going to be in tonight so I could sign papers. I told her I could come in first thing in the morning, but she said the anesthegiologist wants everything in order first thing, so I was able to do an over the phone consent. She then briefly explained the procedure, and told me she would see me in the morning. So that is the latest news I will update tomorrow after surgery. Good luck to my little Lilah!!

Surgery Cancelled

Well I was so nervous the night before her surgery, that I barely got any sleep. I arranged for Kristin to take the kids all day so I could spend the whole day at the hospital with Lilah. Her surgery was scheduled for noon. I planned on being there for 10, so I could be with her for a couple hours before she had to go in. Her nurse said the neurosurgeons would be up to talk to me before she went in. They had started an IV to get her hydrated before surgery, and they had withheld food since 3 am. She was wide awake and fussy because she was so hungry. It's funny because this is the first time I really heard her cry. She seemed really pissed off! The neurosurgeon came in and says to me, we're here to see if Lilah is going to need her shunt surgery. I was wondering why he would say this, because I thought it was a definite thing. He felt her fontanelle (soft spot) for a brief couple seconds and says I think we can hold off, this is as normal a fontanelle as any I've ever felt. One of the ways they can tell if fluid is building up is by feeling the soft spot and the bones. I'm not exactly sure what they feel for, or how they tell but I guess they can. He went on to say how he compared the ultrasound from when I was pregnant with her to the cat scan they took the other day, and the ventricles were the same size, if not slightly smaller. He thought this was an indication that it might be slowly draining on its own. He also said that this didn't mean that she wouldn't eventually need a shunt, just not today. Any day, week, month that we can prolong the shunt will be better on her if she does end up needing surgery. She will be bigger and stronger, so the surgery won't be as dangerous for her. He told me the nurses would still be checking the daily head circumferences and if there is a change, they will reassess the situation and take it from there. I still have my doubts about this, and maybe he sensed that, because he said that he has been doing this for 32 years, and he knew a normal fontanelle when he felt one. Again, I hope to god they know what they're doing. After he left the neonatologist came in and apologized for all the ups and downs, and that I had come in all prepared and nothing happened. She also said they would talk to the other neurosurgeon to see if he felt the same way, not that she didn't trust this one, but just to make sure. This didn'r make me feel any better. They told her she can start her feeding back up, and if I wanted to I could feed her. I warmed up a bottle, and she sucked it right down. She was really hungry, the nurse couldn't believe how fast she drank it.

Another issue going on is that she has MRCA, which is basically a strain of staph infection that is resistant to broad spectrum antibiotics. It won't make her sick, it is just present in her body, so other people who have weakened immune systems, or are prone to catching MRSA, could catch it from her. The nurses and doctors have to take extra precautions, so they don't infect the other babies. Everytime they come in the room they have to put on a gown and gloves, and everytime they leave they have to take them off. They told me healthy adults rarely catch it, but told me I should wash my hands before I hold her and before I leave. I guess it's quite common in hospitals. I was worried at first, but at least it is nothing that will affect her. The last thing we need is some drug resistant infection to add into the mix.

Today I picked up Chevelle from Kristin's house. She slept over there last night. I had to go to Verizon to get a new phone, and met Josh over there. After that we took Chevelle out for Sushi, and went over to the hospital. It had been awhile since Chevelle had seen the baby, and she always complains that she never gets to spend time with Josh and I alone, so I thought this would be a nice treat for her. Whe we got there I went to walk in her room and it was empty. My heart jumped a little bit, but the nurse was right there and told me they moved her to another room. It has an extra little room before you walk in to hers. It's for extra protection because of the MRSA. I actually like this room better because it is more private. I asked the nurse how she was doing, and she said that her head circumference had gone up very little in the past couple days, compared to what it had gone up to before. She said the only thing she was concerned with was she was extremely sleepy all day and didn't seem to want to suck on her bottle. She was worried this might be a sign of fluid building up. They would check head circumference in the morning, and if there was a difference they would call in Dr. Aleen to see what he wanted to do. She than told me she was sure she would probaly need a shunt soon. I am so sick of the conflucting information. I am so frustrated with it. The visit ended great because I let Chevelle hold her. It was the first time she was allowed to, and you couldn't wipe the smile off her face! I know she is going to be an amazing sister, Lilah will be very lucky to have someone like her to be there and protect her. I hope she has a close relationship to her, like I have with my sisters. There is no other bond like it!

Surgey Scheduled

They have decided to insert a VP shunt in Lilah' head. The EVD didn't work, and the fluid is not draining on it's own, so this is the next step. Backing up a little bit, Tuesday I was frustrated because I was supposed to go see the baby, and just as I was leaving, my Jeep woudn't start. One of the kids had left the light on and the battery died. No one was around to give me a jump and Josh wasn't expected home until around 10 that night. I have managed to make it to the hospital every day since she was born, and I was feeling like if I didn't see her, I was a bad mother somehow. Luckily Kristin got out of school early and drove me to the hospital at about 9 at night. Josh who was crackfilling, met me over there. I had mentioned in a previous blog how they had started bottle feeding, which didn't go to well, but when I arrived they asked me if I wanted to feed her a bottle, and she drank half of it. The OT (occupational therapist) had been working with her and she had been feeding really well, taking whole and half bottles. So all in all the night ended fabulously because I got to feed her a bottle for the first time!

The next day I had plans to meet Randy and his mother Corina (Josh's aunt)over at the hospital so Corina could see Lilah. I was also hoping on hearing some news about the plan of action for Lilah's hydrocephalus. The nurse said that they were planning on giving her a cat scan the following day, and that they would probably get her on the schedule for surgery. I asked if Allen had been in, and she said she would check for me. She talked to the neonatologist who came in and told me that she had seen Allen but they hadn't dicussed Lilah (rolls eyes), so she said she would give him a buzz at home. She came in a few moments later and pretty much told me the same thing the nurse did, about the planned cat scan and all. I was able to feed her another bottle, and then I went to dinner with Randy, Ryan, Corina, and Des at Silly's. I had my first taste of fried pickles yum yum!

So today it was a beautiful day out and I took the kids to Deering Oaks Park. Afterwards I dropped them all off at Kat's house, and headed over to Maine Med. When I arrived I could definately tell that her head looked larger. Also she looked very pale and sickly to me and was very fussy. I was really worried at this point, because I'm thinking to myself how can they let her sit here with this fluid bulding up and not do anything about it. A new nurse I had never seen before came in and said they had done the cat scan, but didn't know the results because Dr. Allen had to go over them. They would call me as soon as they knew anything. She said she had a fairly good day, but her oxygen levels were all over the place and she had a pretty significant de-sat the previous night. She then asked if I wanted to hold her, and while I was, the anesthegioloist (sp?) came in with a consent form for surgery tomorrow. He's like as you know she is having her shunt installed tomorrow, and I said umm no I didn't know this, and he said well she is on the schedule for 12:45, so he went over the risks and all that. It's general anesthesia and the risks are no different for a baby than an adult. He said they will have to insert a breathing tube and afterwards she might be a little sleepy and cranky. They will give her medicine for pain if she needs it. When the nurse came back in to put Lilah back I told her she was scheduled for surgery and she was surprised, she had no idea. I have to tell you Maine Med is amazing for the most part, but sometimes they seem a little disorganized and it can be frustrating at times. I am just so happy that they are going to do it tomorrow instead of waiting, I was so nervous about further brain damage. Josh kept telling me not to worry, that I had to trust that the docs know what they're doing, but you hear such bad horror stories all the time, that you have to wonder if they're making the right decisions. When I arrved home my phone rang and it was a neurosurgeon who was going to be assisting in her operation he explained the procedure, which he called "straight-forward", said it would only take about an hour. He said this is hopefully a permanent solution, but shunts are notorious for complicatons, and at her young age problems are inevitable, the biggest risk being infection. It is not a question of if it will fail or be infected, it is a question of when. For someone like me, with anxiety problems this is not a good thing. I can just see myself rushing her to the ER for every little fever, thinking it's infected. Or if she seems tired and listless, I know I will automatically think it is failing and the fluid is building up. I can also see myself taking daily head circumferences to see if there is any change in head size. I know many parents of children with hydro go through this, but a lot of them say that when something actually does happen you can tell how different it is from the little things that you spend your time worrying about. I will post tomorrow night after surgery. Wish her luck!

Busy, Busy

Daddy finally getting to hold her! Happy Birthday Velle!!!

I survived Chevelle's birthday party without killing anyone, so that was good. It went really well, she had some friends show up, and all her cousins were here. Everyone had a blast. The night prior to her party, Josh's mom and sister-in-law came up and took all the kids to the Best Western for the night to go swimming, and to sleep in the hotel. Before they headed over there, I took them to to hospital to see Lilah, it was late so I was hoping to meet up with Dr. Allen to see what he had to say. The nurse she had came in and said she has been doing great with her oxygen, and had a really good night. They had attempted to bottle feed, but her oxygen leveles kept dipping low, and it seemed to stress her out. They wanted to make bottle feeding a positive experience, and not have her associate it with stress, so they stopped. It must of really tired her out because the next day she was really sleepy. She said if I hung around for a couple Allen should be in. He came by shortly after, and I asked him what the plan was. He said he did an ultrasound and the venrticles were bigger, also her head circumference had been slowly going up the past couple days (about a quarter centimeter each day). I asked him if he was planning on inserting another EVD (drain), and he said this time he wanted to wait it out and see what happens, sometimes the ventricles will become enlarged and than go back down. The fluid slowly builds up, so unless there is a dramatic change in the fluid, it won't cause any damage, and they will take action before that happens. I asked him if he was waiting to insert a shunt, and he said he didn't want to do that because he doesn't think it'll work. Her ventricles still have a lot of clotted blood in them due to the bleed, so he's afraid if he puts one in the blood will just clog it. Well I hope they know what they're doing, because I kind of dislike this wait and see attitude when it come to my child's brain. Other than that she is gaining weight, and doing really well.

After the party Saturday, Josh and I decided to go to the hospital while Kat stayed with the kids. Lately they have been letting us take her out and put her back ourselves, as long as she seems to be stable. I took her out when I got there, she had just been fed, so she was dead to the world. I rocked her for a little while, then Josh said he wanted to hold her. Since she has been born, he has sacrificed his time to hold her so I could get as much bonding time as possible. I am happy that she is well enough to be able to be passed around. I think he is as in love with her as I am. She was so comfortable that she actually had a major de-sat (drop in oxygen level) It went from 95 to 49, the nurse came in and picked her up and flicked her feet and rubbed her chest. She was trying to wake her up because she was sleeping so deeply. She said sometimes when they are held, they get too comfortable and forget to breathe. Sounds sweet but it was definately scary.

I went to the hospital yesterday by myself, and again she was doing great, and looked great, so I took her out and held her and rocked her, the nurse said her head circumference was up another half centimeter to 31.5, a week ago it was 30 and a quarter. I am anxious to go in today to see if Allen did another head ultrasound, and to see what the plan of action is, if any. I will keep you all updated as soon as I hear anything. I want to thank everyone again for their support!

3 weeks tomorrow!

So Lilah will be 3 weeks tomorrow. She has done well and accomplished a lot in 3 weeks! I went to see her yesterday with my mom and Josh. It was time for her to eat, and they always changer her diaper and take her temp at the same time. I was there so I was able to do it. She was wide awake the whole time. I had never seen her this awake, it was a nice surprise. I held her for an hour or so, and I was just talking to her and she stared at me the whole time. Josh would talk to her from over my shoulder and she would immediately turn her head to him, than back to me when I spoke. I am soooo in love! I held her through her feeding, than rocked her to sleep. Unfortunately I had to put her back because I had to get home for Chevelle.


Today Kristin picked me up in the morning to see Lilah, and than to Wal-Mart to pick up some things for Velle's party. She was sleeping when we got there, and I didn't want to disturb her so I didn't ask to hold her. One of her nurses came in and said she had a wonderful night, and was doing great. She told me that she knew I was pumping breast milk, but wanted to know if I was planning on feeding her the milk through a bottle. I told her that was probably my plan, because I wouldn't be able to spend a lot of time at the hospital to breast feed. They wanted to know this because they plan on trying to bottle feed her. Lilah is showing all the signs that she is ready to eat, such as being wide awake when she is hungry and trying to suck on everything when she wants to eat. I was so stoked to hear this, it means she is one step closer to coming home. This was great news, but her head circumference went up a quarter of a centimeter, which probably means fluid is accumulating again. Dr. Allen is coming in tomorrow to do a head ultrasound, then he'll compare them to the one that was taken after the drain came out, and then take it from there. I haven't been able to talk to Allen because I haven't been there at the same time as him. The nurse seems to think he is waiting for her to gain weight, and be a little less dependent on the oxygen, then insert a shunt. Last time I talked to him he didn't seem to think she would need one, so I don't know if the nurse was mistaken, or if he changed his mind because the drain doesn't seem to be working. I think that the nurses automatically assume she is getting a shunt, because the majority of children with hydrocephalus have to have one. I am hoping ot speak with him soon to clear all this up.

We had a parent teacher conference for Chevelle, which went extremely well. Her teacher went on and on about how delightful she was and sweet and helpful. She said she was a teacher's dream. She said she noticed all the other kids looked up to her as a role model, and as someone who helps them out when they need it. She wrote in one of her journal entrys how she hated when school ends because she has to stop learning. The teacher thought this was so funny and she even showed it to her son as an example of being enthusiastic about school. Her son responded to it in disbelief saying "kids actually exist that like school" lol I am so proud of her! So overall a good day for my girls! I am getting ready for an eventful weekend with Chevelle's party, which my in-laws are coming up for. I am looking forward to seeing everyone, I just hope I don't go nuts trying to entertain all these 8 year old girls! I will post after the weekend to inform everyone how everything went.

The Drain is Back Out!

Yesterday I went in to see Lilah, and when I arrived the physical therapist was there working with her. I thought how could they possibly wokr with a newborn, but she was just there to make sure her sucking reflexes were going ok, and looking at her muscle tone and such. She said she has a really good sucking reflex, and she holds her hands up by her face, and grabs at her face, which I guess they like to see in newborns. She said that preemies will tend to be a little far behind than full term babies, so she could still be slightly behind, and that doesn't necessarily mean it is because of brain damage. She said there would be no way to know for certain now, and even if there were certain parts that were possibly damaged, healthy parts of the brain can make up for the damaged parts. When she is discharged she will be set up with a physical therapist, and they will be able to track her progress and see if she needs help in certain areas. Some children with hydrocephalus have fairly large heads, so holding their heads up, sitting, crawling, can be very difficult. Lilah's head is a little misshapen but not at all large for her age. I am hoping she will be able to hit all her milestones, and I won't have to worry about any of this. She gave me a information packet that gave information on the difference between a preemie vs. a full-term baby. It had everything in it from preemie sleep patterns, to handling them, to positioning them. It seemed full of useful info, especially for when I take her home.

I noticed on the little message board in lilah's room, that there was a notecard from bella baby photography saying they had taken her picture, and gave me a link and password, if I wanted to order any. I was wondering about this, because I had signed a release when I was in the hospital for them to take her picture. I knew it was a little different in the NICU, but I wasn't sure quite how they went about taking the pics. I guess they go in there weekly and take pics of the babies to journal their growth and progress, then if you want you can order the pics. I ended up ordering one even though they were ridiculously expensive. It was in black and white and she looked so beautiful, I couldn't help myself lol I am just hoping that they will take another one when the drain and oxygen canulas are out.

I knew that the plan was to take out the drain today, so I waited until about noon then headed over there. I was dissapointed when I arrived and the drain was still in. I had to leave by three because Josh had an appointment, and I had no way to get to the hospital the rest of the day. I was sad that I wouldn't get to hold her. I was there for about an hour and the neonatologist told me he was going to take it out, I didn't know that they could, I just automatically assumed the neurologist had to do it, but I guess I was wrong. He told me I could leave if I didn't want to see, but I stayed in the room, although I definately didn't want to watch. Josh of course did, he is so strange sometimes ( :
The whole thing lasted about 5 minutes, the hardest part was getting all the tape off of her full head of hair, and this was the only part she cried through, she is such a trouper ( : I guess it's pretty much like pulling out a catheter or IV. I assumed it went in a lot farther than it actually does. The nurse told me they were going to do a quick ultrasound and take some pics so the neurologist (not Dr. Allen, he is on vaca still) could review them. She didn't comment on what she was seeing, and when she was done she said she would pass the pictures to the neurologist on call. Dr. Allen won't be back until thursday, and I guess he is the only one who can put the drain back in, so hopefully she doesn't need it by then. The nurse was happy that they could finally move her head around, because she felt her neck and could tell the muscle was stiff rom being in one position, poor thing! I was able to change her diaper, and I asked Josh if he wanted to do it, he was like no way, but when I started changing her, he came over and helped me. It was a real sweet gesture. Finally the best part about the trip, I got to hold her again! It had been a week and a day since the last time, so basically it felt like forever. I feel bad because every time I hold her they have to spike up her oxygen, but I guess this is normal.

I am planning on heading over to the hospital tomorrow with Josh and my mother. It has been two weeks since she was able to see her, because she came down with a cold and didn't want to risk being around her. Josh hasn't been able to see her as often as I have because he is trying to start his own business, plus working another job at night to make ends meet. He literally is working from 6 in the morning until midnight. He is amazing, I wish I could be more like him. When I am feeling down I have to remind myself that Josh not only has to worry about the baby, like me, but also has to worry about financially supporting the family, and being able to pay our mortgage. He handles all this with a positive additude, and a smile on his face, so I have been trying to do the same. It is hard sometimes, I hate when I start to feel sorry for myself, that is something I promised I would never do, so I just have to snap myself out of it and move on. Believe me I am trying my best!