Growing Baby Girl..

It has been over a week since I updated and Lilah has had a couple OT and PT sessions. Everything is going well with her progress, she is really coming along. Last week Lisa (PT) was working on her hips and hamstrings. Lilah was actually awke this time. She noticed, as well as I, that when she moved her right hip, it seemed to be quite uncomfortable for her. She was really screaming. She also noted that she seemed to move the other side a lot easier and more frequently then the right side. She said that I should mention it to the doctor next time she had an appointment. I asked her if she thought I should call sooner, since her next appointment wasn't for another two months. I also mentioned that she had a hip ultrasound scheduled for the end of July. She proceeded to do some more stretches with her, and then turned her on her stomach. In this position she seemed to be moving it just fine, and equally as much as the other side. Lisa said that was what she wanted to see, so she would hold off on calling the doc. She said that it could be just because it is really tight. She wanted me to continue to do the exercises that she had taught me. Other then that she said she was definately gettign there, and making progress. Her OT Susan came last week and again Lilah was sleeping so it was hard for her to do the things that OTs do, such as getting her to track objects with her eyes, and have her lift her head and turn it. She suggested that if she was sleeping during her next session we might try to change the appointment to earlier in the morning when she might be more awake. Susan did as much as she could with her sleeping. Michelle the nurse came and weiged her she is up to 7 pounds 7 ounces, still a little teenie thing, but she's getting there. She said she's looking really good, and that she was on vacation the following week, and said since I had an appointment with the pulmonary doc, it wasn't really necessary for a nurse to come in that week.


This past week was a little rough as far as Lilah's sleeping habits. I don't know what it was but she just cried and cried all night. It almost seemed like she was in pain or uncomfortable. It was odd to me, because she will be content in her crib during the day. She will lie there for a long time wide awake and not fuss, and she was awake all night for 3 or 4 days straight. Then, of course, she slept all day becuase she was exhausted. I was trying to rack my brain and figure out what could be bothering her. I set up her little music player on her portable crib, it plays clasical music, and has relaxing nature sounds. It also vibrates hard enough so that she can feel the vibrations when she is lying in the crib. That seemed to help a little, along with a pacifier, but she was still fussing on and off all night. I was thinking that it could possibly be her meds, but she takes the same meds in the morn and has no problems. The only thing she takes at night are her poly-vitamins, so I thought this might be the problem. I remember when she was in the NICU they said the vitamins can upset the babies stomachs. I switched the time I give her the vitamins from 9 pm to 12pm. I gave her the other meds at 9 like usual and put her to bed. She fussed a little bit on and off until 12:30 fell asleep until 5, ate, then slept until 10. I had also left the TV on, because Josh suggested she might be so used to the noise and light during the day that it could be upsetting to have it so dark and quiet. Who knows if it is a big coincidence or not that she slept ok, we'll just have to wait and see.


Her appointment with Dr. Cairns, the pulmonary doctor was on Monday of this week. Josh wasn't available to come with me, so this was the first time I had to take her to an appointment myself. I can carry all her stuff with two hands, it's just a matter of positioning everything on my arms in a comfortable way. It was heavy and awkward, but I was able to handle it. First thing they did was weigh her and she was 7 pounds 9, so up a couple ounces since the nurse checked her out a couple days prior. They also took her length which was 20 inches. She aksed me if she had any episodes such as de-sats, coughing and spitting up when she's eating etc. She said her lungs sounded great and she had no pulling or retracting when she takes a breath. She looked fine, but they wanted to keep her on the O2 for another month, then check back. When Lilah goes back in for her follow-up, they will probably have me start taking her off during the day and see how she does. I was a little dissapointed that we couldn't try this now, but we're getting there. She also wanted me to continue her meds, and get some bloodwork done to check her electrolytes, to make sure her diuretics aren't depleting her potassium and sodium and such. They will also check to make sure she isn't getting too much potassium.


Moving on to this week, she had another session with Lisa, who was really excited to see that she was awake again. Two week in a row! She said to me wow she's a totally different baby when she is awake and alert. She had her on her belly to see if she would do some head lifts. She lifted her head pretty far up and turned it side to side, she said this was really good progress. She also noticed that Lilah seemed to be getting more comfortable being on her belly, she HATED it before. Susan came in today, and was pleased to see her awake. This was the first time she worked with her when she was awake. Susan is so great with her, and was telling her how pretty she was and going on and on about her pretty eyes and lips. She had her moving her head mainly to the right, because this is where all the tightness is, You can tell how it bothers her when we move it to that side. Again this is the side her shunt is on. She doesn't think it's the shunt itself that is tender because when you press on it, it doesn't bother her. It almost seems that there is a certain point that it hurts her when she is turning her head, then when she is past that point she is ok. She had her on her belly and she did more head lifts. She also had her on her back and had her tracking objects with her eyes and getting her to move her head over to the right side. She did rather well with this. She also seemed to prefer to look towards the window, maybe because it is so bright over there. She also seems to respond better to bright colorful toys then noisy ones. She told me to try to get her to turn her head by putting objects over there for her to look at. She showed me how positioning her arm extended out and the other arm pulled close to her body caused her to turn her head. This is a reflex thing. It's pretty cool that you can control her head movements by positioning her arms. She was also impressed with her progress, and we will continue to work on all the things we talked about. Putting all this medical stuff aside, she is an absolute joy to have around. I could be in the crappiest mood and I just have to look at her and it instantly cheers me up. She is extremely easy going and has such a sweet disposition. She is starting to get a little personality, and I am excited to see her progression and growth in the upcoming months.

A Good Week for Miss Lilah...

Lilah had another busy week full of therapy and appountments. She had her shunt check-up with Dr. Wilson on Thursday. Josh left work and was able to accompany me, thank god, because again there were many things to carry. I will be so elated when she is off the oxygen and monitor. Every body was super nice at the docs. We had to bring Ethan because I couldn't find a sitter, and Dr. Wilson's staff were very kind to him. They gave him stickers and talked with him and asked him questions. I was in the office for quite awhile when the neurosurgeon walked in, but it wasn't Dr. Wilson, it was another doctor I had never metr. I guess he works there with Dr. Wilson. He checked out her shunt and where her incision was and said everything looked good, but didn't really elaborate. He asked if she had any seizure activity, and I told him no. I did mention that she has a slight leg tremor. The way I explained it was when you scratch a dog and they thump their leg, it's kind of like that. She seems to only do it when she's stretching. He asked me if I had a follow-up with Dr. Allen (the neurologist) and I said no. He told me that he didn't think it was something to be concerned about. I did some research on this and read that this can be a common thing in preemies and even babies so that put my mind a little at ease. I also read that tremors can be a sign of brain damage too, but I think I am reading into things more than I should just because of the possible trauma her brain might have sustained. So anyways he left and Dr. Wilson came in, He is one of the nicest Doctors I have encountered on this journey. He puts his hand on your shoulders and looks you straight in the eye, and really makes you feel comfortable and at ease. He is the type that calls everyone hun ( : So he takes one look at her and immediately says This is exactly what we want to see, no swelling, no fluid build-up, absolutely perfect. He said he was so pleased with how everything looked. He siad her belly incision looked beautiful, and it seemed like everything was going great. He told me there was of course still a chance of failure or infection, and went over the list of signs to look for. He wanted to see her in six months for a cat scan and follow-up. He told me all I needed to do now was go home and love her. I tild him I would have no problem doing that ( :







Her visiting nurse Megan came on Wedneday, and did the typical routine of taking vitals, and weighing her etc. Her scale said she weighed 7 pounds 1 ounce, and if that were accurate would mean she only gained an ounce since her doctor appointment the previous week. She said that it could be that their scales are slightly different, or they might have not lifted her oxygen monitor cord up. Anyways she will be weighed with the same scale this week so I am hoping for a good weight gain, she has been eating like a little pig so I would assume she gained. She asked me how her sleeping and eating was going and I told her it was going well. She took a head circumference which was 34.5 so that is good it hasn't gone up. It ended up being 35 the folowing day at Dr. Wilsons, but she said that people can take the measurements slightly different so a half a centimeter usually means nothing. She said Lilah looked good, and she will be back the following week.





Her PT Lisa came on Thursday, but wasn't able to do too much with her due to Lilah being off in dreamland as usual. She did say that her hips seemed better, and her hamstrings a little looser, so she said I was doing a good job with the exercises. Lilah wasn't too happy with Lisa's therapy session she kept crying everytime she did something, then when she would stop she would go back to sleep. She was putting her on her belly to try to get her to lift her head up, and push up on her shoulders, this strengthens the shoulder muscles, but again all Lilah wanted to do was sleep. She said usually at this age they will stay awake for the session because they're being poked and prodded, not Lilah though, she has her own plans. She stressed to me how important "tummy time" is for shoulder strength, and head control, and to make sure I have her do this whenever possible. She also told me to continue with the exercises we had talked about. Her OT Susan called me that morning and told me that her and Lisa discussed that it would be best if they both came every week (which I had already been informed of by Lisa) I told her I thought that was a good idea too, and I would see her on Wednesday, she said she wasn't able to make it that week, but she would come this week.





Friday I took a ride up to Augusta, to pick up my friend Shaina. I know her from Mass, but her dad lives way up in northern Maine, and she was visting him. Her step mom drove her down about 6 hours to meet me in Augusta which is about an hour and fifteen minutes north from me. I decided to take Lilah with me, to see how she would do on an extended trip, she did good,slept the whole way, big surprise. Shaina has a 6 month old baby named Sierra, so Lilah had a little playmate. Of course Lilah seemed like a peanut compared to her, not only because Lilah is so small for her age, but because Sierra is really big. She weighs 19 pounds, so she's a little chunky, but soooo adorable. All she wanted to do was grab at Lilah and eat her hands haha. We all took a trip down to Old Orchard beach Friday night. We took the kids to the arcade down there, and I just wheeled Lilah around in her carriage while Josh played with the kids. Luckily the place was deserted to there was plenty of room for Lilah's huge carriage. Lilah slept through her first big outing of course. She had also taken a short trip to the mall with me that week, so she had a very adventurous week. It feels great to take her out and treat her like a "normal baby" I am getting more comfortable with getting her ready and taking her out. I don't have that feeling of oh she's so fragile, I think we should just stay home with her. It was nice walking around with her in her carriage, and showing her off to everybody, athough she has raised some eyebrows, with her oxygen tank and monitor in tow lol She has PT and OT this week and Megan her nurse is coming. I also have a planned trip to Chuck E. Cheese with her and the kids, do I will update st the end of the week.