Coming Home!

Really good news from the NICU team, Lilah will be coming home within the next couple days. I knew the day was comign soon, but when I arrived at the hospital yesterday with Randy and Ryan, the nurse came in and told me she tried calling me because she wanted to discuss some thing we have to do before she comes home. I asked well when will that be, and she said hopefully by her due date, which is Thursday! First thing I have to do is take in her car seat today, so they can do a carseat test. They are going to have to check out my jeep to let me know the best way to transport her oxygen tank. It has to be secure because if something were to hit it or puncture it, it turns into a giant missle (her words). Both Josh and I are going to have to watch the CPR DVD, and a DVD on Shaken Baby Syndrome. They said they would try to fit her hearing screen in last night, so we can get that out of the way. She'll also be needing her hepatitis B shot. We will have to go through all her medications and when and how to distribte them, and she will be going home with an oxygen tank and a monitor so we will have to learn how to do all that too. She asked if I am going to be ok with all this, and I said I don't care what I have to do I just want her home. She said it'll be a lot of work, and I probably won't be going anywhere anytime soon, but this is they way to get her home. I am a little nervous about having her home, but so excited. I was telling Josh last night, it feels like we are going to pick up a kid we adopted, it feels somewhat like we didn't even have a baby. When you give birth and take a baby home you never lose that connection, because they go straight from being inside you to being beside you. Not that I don't feel a connection, but it's almost like you have to get to know your baby all over again. Strangers have essentially been her parents over the last month and a half, and now I have to step into that role. I have come to realize over the past weeks that they know more about her then I do. I am hoping that everything will come natural and easy and it'll feel like she was always here. I am also a little nervous about bringing her home here to the hectic and crazy environment that is the Berthiaume household. I am hoping that she won't be too stressed out. Then again she won't be getting poked and prodded on a daily basis, so maybe she will like it better. Who knows. I will also have many follow-up appointments in the next couple months, so it looks like I will be having a busy summer. I am actually looking forward to the sleepless nights and the diapers and responsibility This is what I have been waiting for!!

Happy Mother's Day!

While Lilah is not home for this Mother's Day like I had originally hoped for, I think the day is coming soon. I went into the hospital Friday morning, after I had my six week post natal check-up. They were just starting morning rounds, and I got to talk with the neo doc on call. He told me that she has made great progress and she should be coming home soon. They might even move her into the step-down nursey in a couple days. She has been taking about 90% of her feedings by bottle, and he was really impressed with how she has been eating, considering she just had major surgery a week and a half ago. Her sutures in her head came out last week, and they will be taking the stitches in her belly out within the next couple days. The nurse said they would be giving me a homeward bound folder to look over with info that will prepare us for taking her home. They also told me they might send her home on oxygen, because if we wait until she is weaned she could be in there for a while longer. If it comes down to the only thing keeping her there is the oxygen, then they will just send her home on it. They asked me if I would be willing to do that, and I told them at this point I'd be willing to do anything, as long as she can come home. Yesterday when I arrived there they had a paper hanging above her crib that was titled Discharge Goals and had a list of things she has to accomplish in order to come home. Next to each goal was a space to enter the date she accomplished that. So far the only one checked off was the maintain tempature in an open crib one lol Here is a picture of it below:

It's kind of hard to see, but it sure seems like a long list. The nurse pointed out that a lot of them are things WE have to do like watch a CPR video, talk to the Discharge Planner, have a doctor set up for her etc. Some of the things are easy like getting a Hepatitis B vaccine and a hearing screening. She has to pass a car seat test which means she has to sit in the car seat for the duration of the ride home (25 minutes) hooked up to monitors and see how her body responds to it. The nurse reassured me that she would meet all these goals real soon. I hope so!

Mother's Day was today, and Josh and the kids did everything to make sure it was special. Josh took Ethan to get me a necklace yesterday, and Ethan couldn't wait to give it to me so I recieved it a day early. Chevelle made me something in school along with a poem she wrote. It was really sweet. Tyler made me a card and cleaned my house (possibly the best present of all). Even Kat gave me a card. Today when I went to pick up Josh at his shop he had flowers and a card for me. I always enjoy getting cards from him, because he rarely gives them. This time he wrote something really sweet and heartfelt and it made me cry. The best part of Mother's Day was seeing Lilah and I even recieved something from her (: The director of The March of Dimes made this for all the moms in the NICU:

Here is a Mother's day photo courtesy of Chevelle:

I have to say by far this is the best Mother's Day I've ever had because I feel like my family is finally complete. Tyler is up with us, and Lilah is here. I always felt that even after I had Chevelle and Ethan there was supposed to be someone else. I don't have that feeling this time around. We have finally built the family we always wanted. I have to say though it won't feel 100% complete until Lilah is home, and of course there will always be a spot that is empty because Brittany isn't here, but that spot will never be filled up by another child, it is meant to stay empty. I truly am in a good place right now, and I don't think I would be in this place if it wasn't for the journey we have been going through with Lilah. Something like this really puts things in perspective. It is time to go to bed, hopefully the next time I post it will be with a discharge date!

Making Progress

It's been awhile since I updated so I will try to remember everything that has been going on. There is not that much to report, mostly good news thankfully. Lilah is gaining weight fast, she is up to 5 pounds 10 ounces. Her neurosurgeon stopped by and said that she is healing beautifully. The shunt seems to be working well, and her head size has gone down a centimeter. The ultrasound showed that her ventricles are still large, but they haven't increased in size since the shunt was placed. She was almost completely off the oxygen before her surgery, but the surgery seemed to set her back a bit on her progress with this. It is a week after her procedure and she is almost back down to what she was before the shunt was placed (basically room air). She has been doing well with eating, tolerating her bottle feedings. She sleeps a lot, which sucks because if she is really zonked out she doesn't want anything to do with her bottle, and she has to eat a certain amount every three hours. So basically if she doesn't want the bottle they don't force it, they just give her the rest in her gavage. I noticed when I feed her I have to stop quite often or her oxygen sats go way down. It is nice to have a monitor to know when she isn't handling it well and I need to slow down. She finally is in a regular crib, it is so nice to be able to see her and touch her without having to stick your hands through holes in an incubator. Below is a pic of her in her crib, they will be sticking her in a metal crib with bars in a couple days:



















She's so happy she's in a big girl crib she's grinning ( :
















Another bit of good news, she had an eye test today, and passed with flying colors ( : Everyday she seems to be getting stronger. Sometimes I get so down thinking she is never going to come home, but than I look back over the last month and I can see how much progress she has made in that short of time. If she can come this far in a month, I am sure she will be able to come home soon. It's what keeps me going. My original hope was for Mother's Day, that would be the ultimate present. That doesn't look too promising, considering it's next Sunday, but you never know.


Josh has been working his butt off getting this business off the ground. I don't think he has seen Lilah in over four days. I feel bad for him because I know he wants to spend time with her, but he wants to be able to provide for us and pay our mortgage. I am sorry that the burden falls solely on him at the moment. He actually told me the other day that he was jealous that I got to spend all my time with the kids. I just reassured them that his kids will understand when they're older and that they will have nothing but respect for him, knowing how hard he worked to give them the best life possible. I am sure they will have a strong work ethic watching him break his back for his family. It has been hard for us lately with all the troubles, we have been snapping at each other more. It is hard not to take it out on the one you love, when you have so much stress in your lives. He keeps telling me that these are the times when we need to be on the same page, and stick together. We have been through some tough times in ten years, and we always manage to pull through, so I know this is just a little bump in the road. He is going to leave work a little early tomorrow and we are going to see Lilah together. I can't wait!! I want to thank everyone again for their support!

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!