Finally coming home

It's been a week or so since my last post, and a lot has happened. As I previously wrote, we thought Lilah was going to come home late last week. I went to see her Thursday, she had been moved into the Continuous Care Nursery (CCN). It is basically set up just like the NICU, except they're not as monitored closely as the NICU babies. They also focus on getting all the proper things in order for the babies to go home. The neonatologist on call came in to talk to me and told me she wasn't going to go home until early the following week. She was definately well enough to go home, but there were many things I as her caretaker had to learn before I could take her home. He was extremely helpful, he sat down with me face to face and said ask me any questions that you might have, and I'll answer them the best I can. I really appreciated it because it gave me a chance to voice some concerns I had. As you all know I posted a picture of the goals she had to obtain before discharge and most of the goals that the hospital had to take care of were met, such as the Hep B shot, the car seat angle test and the hearing screen (both which she passed) All the other things were goals that I had to get done, and the reason why she couldn't come home last week, these things would take a little bit of time. One of the goals was to meet with a discharge planner. Since I wasn't at the hospital when she was, she called me at home. She is a really helful person to have around because she set me up with all the services I need. She set me up with a visiting nurse agency who will be coming to the house frequently after she is released to check her vitals, growth, to see how she's doing. They will also be the agency that will be sending out Physical Therapists and Occupational Therapists as she needs them. She set me up with the agency that will be supplying her oxygen called Apria. She also set me up with the Neonatologist who she will be going to for a follow-up appointment. His name is Dr. Rock. She called in all her prescriptions to a specialized pharmacy called Apocathary by Design. Her medicines have to be mixed at a compound pharmacy, they can't be mixed at a regular one. This was also a big reason she couldn't go home last week, her medicines would not be ready until Monday. I had to watch some DVDS which I got accomplished last week. I had to learn how to draw up all the medicines, because obviously they don't come in neat little syringes all ready to go like at the hospital, and I had to meet with Apria to learn how to run the oxygen tanks and transport them. It seems like a lot of stuff to learn but it's all pretty straightforward. When I went to see Lilah Friday, she was in the middle of her physical therapy and she showed me some exercises to do with her to loosen up her muscles, and to strengthen the muscles in her neck. She is already able to hold her head up pretty good so that's a plus. She said when she first started working with her her legs were always stiffened upwards, she wanted them to be more fluid. She started exercises to loosen them up, and she said she could already see a great improvement.

Fast forward to this morning I arrived there pretty early because this was the day I was supposed to get a lot of these goals accomplished. Apria was supposed to meet me at 3. The nurse was going to show me how to draw up the meds, and the car seat coordinator was going to show me how to install the base properly and transport the oxygen. She also had a head ultrasound scheduled and an echocardiogram. They had already done the head ultrasound by the time I arrived, but I was present for the echo. I had written in one of my previous blogs, that the chambers of her heart had not closed yet, so they wanted to do a follow-up. The cardiologist came in afterwards and said all but one had closed, so they wanted to see her in 6 months to check on that. The nurse showed me how to do the meds, and gave me the schedule for them. Again, pretty straightforward. Apria came in and taught me how to hook up the oxygen tank, and how to change it to the portable one. She showed me how to change the nose canulas and how often to clean them. I also learned how to attatch the oxygen sensor, which is basically a little band-aid type thing on the bottom of her foot that goes into the monitor, which will beep if her sats go below 90. She told me the large oxygen tank will last me six days, and when I get close to running out I have to order a new on which they deliver to the house. It has a little knob on the side that lets you know when it is getting low. Ahe warned me that I shouldn't travel with her unless I absolutely have to because these tanks are basically tiny missles, so the less I travel the less chance of an accident that could send one of these flying. I told her I wasn't planning on jetsetting around town with a newborn anyways. They can't see her being on it for much longer anyways. The neo doc came in and asked if I was prepared to take her home, because tomorrow was the big day! I said Oh I am more than ready. So I think that is all the up to date news. I will post tomorrow after I get her home if I am not preoccupied with her cuteness, and I am not too busy smothering her with affection ( :

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!

Lilah had to miss her first holiday ) :

Josh's parents came up for Easter, and to see Lilah. My sister Kristin came with the girls, and my mom was here. We did an easter egg hunt with all the kids and the weather was beautiful!! 75 degrees, which in Maine in the early month of April is pretty rare. I was upset that Lilah wasn't here, but I just told myself that if she was healthy she wouldn't have been born until May therefore she wouldn't have been here anyways. I bought her a stuffed bunny to bring into the hospital for her, so I could feel like she had a little part of our Easter. When we arrived at the hospital, there was a little easter card taped to her Isolette. It was a little poem from "Lilah". It was extremely sweet and made me cry. Josh's dad said he couldn't believe how small she was. His mom said she resembled Chevelle. They stayed for a little while before heading home. I didn't ask if I could hold her this time because she looked so peaceful, I didn't want to disturb her. The nurse said she was doing well, and Josh and I stayed for an hour or so before heading back home.


This morning we decided to go in and see her because Dr. Allen said if he was going to need to put another drain in he would know by today. We walked in and no drain, but the nurse came in shortly after and told us that Allen makes his rounds later in the evening so they wouldn't know until then. I was dissapointed because I couldn't make it to the hospital later that day, Josh was working, but they told us they would call us, or we could call them. The nurse asked if I wanted to hold her because if she has the drain re-inserted I wouldn't be able to hold her again for a week. As I was holding her I noticed her oxygen levels were dropping, and the nurse came in to turn it up a little. She told us that moving her could have been the problem, for some reason her body responds better to being on her belly. As I was holding her the Nurse Practitioner came in and told me that since last night she had a couple de-sats, and congestion in her chest which could mean a possible issue with her heart. The neo doc ordered an ultrasound and they didn't find anything signifigant. They did find a heart murmur, but they said that was fairly common in babies, and it most likely will go away on it's own. They also said that when a baby is in utero the chambers of their hearts are open, and shortly after birth they close up, well Lilah's haven't closed yet so they are keeping an eye on that. I truly hope this is nothing, the last thing we need is heart problems to add to the list. Another nurse informed us that these oxygen sat problems could be the first sign that she might need the drain back in. I want her to get better without the use of a shunt, but it's extremely frustrating knowing that means another week without holding her, another week of her in the hospital. Even if these issues were resolved she still has to gain weight, feed and breathe on her own. She actually has lost weight since birth, going from 4 pounds 3 ounces, down to 3 pounds 13 ounces. They started mixing a high calorie fortified formula in with the breast milk to give her extra calories. I hope this works!


At this point I feel she may never get to come home. I have a fear that she won't know who I am, and that she will suffer in the long run from not having that contact with me. I have been having bad dreams lately, that the doctors tell me she is brain dead and that she isn't going to live. They are horrible and I wake up feeling so depressed. The other night I was thinking back to just a few months ago, when I told Josh I was going to put her in dance, because we never had the money before to enroll Chevelle. I then started thinking ahead to the future in that she may never walk let alone dance. I was reminded of the horrible past, years ago, when I found out Brittany had fallen into the pool, and I recall how the whole ride to the hospital I was crying out loud to my mother, I don't care if she is a vegetable on a ventilator for the rest of her life just please let her be alive. My mother reminded me of this the other day when I was crying over the fact the Lilah may never lead a "normal" life. I told her I only said that because I wasn't in my right mind. I am positive my perspective would have changed if she was left in that state. I even have a living will stating I wouldn't want to be kept alive on machines, so if I would not want it for myself, I certainly wouldn't for my child. I think the point she was trying to convey was that Lilah is alive, and breathing and seemingly ok for the moment, and that I had already been through the worst thing a mother could go through. I was able to get throught that, therefore I could get through this and any problems in the future. After all I have been through, it is hard not thinking about something happening to her, and how the hell I would survive something like that again, and could life possibly be so shitty to me, that it would deal me another hand like that. I am so glad I am able to move around a lot more, because I can start to occupy my time with housework, errands, and chores, instead of sitting here thinking dark thoughts and wallowing in self-pity. Well I am off to bed and I will post tomorrow after I know if she is back on the drain.