MRI, Ultrasound

Dr. Wilson's office called me with a MRI appointment for Lilah, it was scheduled for Thursday the 12th. A couple days prior a nurse from Maine Med called me to ask some questions and give me instructions on what to do prior to bringing her in. She just asked basic questions about her medical history, and said that there may be a chance we have to put her under general anesthesia if she happens to be moving around too much for them to get adequate pictures. Since there was a chance of that, I was not to feed her breast milk sooner than 5 hours before her scheduled MRI. I could give her water two hours prior, and no formula after midnight. I had lost my wallet a couple days before I talked to the nurse, and she told me I would need an ID when I brought her into her appointment. Since I didn't have one Josh came with me to show his proof of ID. I fed her around 4 am, but by the time we arrived, and were seated she was starting to get a little fussy. Luckily we didn't have to wait long, and the nurses were amazing, they kept going on and on about how gorgeous Lilah was and of course commenting on her wild hair that is always sticking up. The nurse told me that her MRI should only take a few moments, they only needed a couple quick pics, and that anesthesia shouldn't be necessary. When we walked into the room, they had this device that they strap the babies in to keep them still, it's almost like a little pappoose that keeps them snug, then velcro straps to hold it together, as soon as they put her in it she started crying, and when they tried to strap her head in she was flipping out. I told her she was really hungry, and she said since she probably wasn't going to need to be put under I could feed her. As I was discussing this Josh was rubbing her feet and shushing her, and it seemed to do the trick because she quieted down. The nurse told Josh to keep doing what he was doing and threw a vest on him so he could stay in the room with Lilah while they took the pictures. She pulled me in the room where the images pops up on the computer, it was pretty cool you could see her skull and where the shunt was. They were right about it only taking a minute, then she was done. They would send the pics to Dr. Wilson and he would contact me if soemthing was wrong.

Her ultrasound went off without a hitch too. The radiologist and technicians were commenting on how good she was. They performed the ultrasound on both hips for a good 10 minutes on each side and she didn't even fuss. They said ususally with babies they have to get a couple technicians to hold them still. The radiologist said it looked fine to him but he had to double check with the other radiologist. He came back in and told me it definately was normal. That was a relief, one less thing to worry about.

She has been making great strides in both OT and PT. She has really good head control and Susan told me she was ready for a Bumbo, which is a seat that supports their backs and allows them to gain strength in their muscles. I purchased one at a second hand store, seeing as how a new one cost 40 dollars. I didn't want to put her in it myself until Susan was here, so when she came last week she had me place her in it and she did a really good job! She looks so cute in it. I will have to get a pic of her in it and post it up soon. We have also been using different textures because Lilah seems to be very hearing and touch oriented, she gets more excited feeling things and listening to things than looking at toys. She brought in a koosh ball for her to feel and a piece of Mylar to put under her blanket and when she's on it and touches the blanket she can hear it crinkle. We have little balls with different textures on them and drag them up and down her arms and legs. This gets her moving with excitement. There is some concern about her eyesight and how well she is seeing, or if she even sees at all. Neither her PT or OT can tell me for sure either way. She has been tolerating tummy time much better, both Susan and Karen noticed that she seems to tolerate the tasks and exercises so much more than before. She will do a lot in a shorter period of time, instead of having to drag it out because she keeps shutting down. I think last week she only had one little shut down and that was towards the end of the therapy. We have been putting her in side lying position which allows her hands to be in front of her, and makes it easier to reach for toys. If they are flat on their backs it is harder to keep hands "mid-line" because of a little thing called gravity lol

Monday she had her Pulmonary appointment, and she is off the oxygen all day except for feedings, and she is still on at night. They tested her potassium levels, which came back a little high, but she said it was nothing to worry about. My next appt. is in 5 weeks. She told me that 2 weeks prior I was to cut her meds in half. the Spirololactone and chlorothiazide will be half doses and the potassium and sodium chloride will be taken away altogether. I feel like she is just getting closer and closer to leading a semi normal life lol I am also tired of all the appointments.

I have her eye appointment with Dr. Burnham this Tuesday, so I will update, hopefully with good news. This is the appointment I am dreading, it will be a real blow if she is blind. I know whatever the outcome I will be able to handle it, I just hate anything that is going to make Lilah's life harder. As if life isn't hard enough. Well I am hoping and praying for good news. We just have to think positively. Below are some 4 month pictures. The first one is of her insane hair do (at its tamest)The second one is Lilah enjoying her tubby time. I have never seen her more happy than when she is in her tub ( :

4 Month Check-up

Lilah had her four month check-up last week. She is up to 9 pounds 14 ounces and she is 21 and 3/4 inches long. Her doc says she is growing as she should be. I brought up all the issues that Susan (OT) and I were worried about. Unfortunately she didn't get to see her shaky eyes for herself because she was screaming so much she didn't have her eyes open. I asked her if she thought I should bring her to see the optometrist that Susan knows, and she told me she would rather Lilah see Dr. Burman, the opthamologist that examined her at the hospital. She said she would call him, then call me with an appointment. Along with the weight and height measurements, they also do head circumferences to make sure that it is following a nice even curve on the chart, just like the height and weight. She informed me that Lilah's head is actually smaller than it should be. She also said she had a hard time finding her soft spot, and was worried that maybe her skull was overlapping and fusing which wouldn't be a good thing. She asked me when Lilah's next follow up with the neurosurgeon was and I said sometime in October, she told me she would call Dr. Wilson and explain what was going on and see if he thought she should go in earlier for a cat scan. He did want to see her in a couple weeks to see what was going on. I guess they are afraid her shunt may be over draining. She has her hip ultrasound in a couple weeks to see how her hips are doing so this month is a busy month for Lilah as far as doctor appointments go. She had her four month shots and was miserable for a couple days. I gave her some Tylenol for the pain, but she was still pretty sore. She also mentioned that normally she would suggest trying solids namely cereal, but thought we should hold off a couple months because of her prematurity.

Therapy has been coming along, both Susan and her new PT Karen definately see improvement in her. She seems stronger, and is starting to explore her hands and some toys. She loves sucking on her fists and thumb (just like Chevelle did). She reaches for faces, but hasn't shown much interest in toys. Karen says this is probably because she just discovered her hands so it's gonna take awhile before she realizes she controls them and can touch them and feel them. Her focus seems to be much better, she will keep her gaze on you much longer, and is always smiling and cooing. She is definately the most happy first thing in the morning when she wakes up. This is also my favorite time with her because the kids are usually still sleeping and we get some quiet alone time. She is going to bed every night really well, and sleeps right through the night without a peep.

I had to go down to Mass to pick up my mom, and while I was down there visited some of my family members that I haven't seen in awhile. I was able to see my great aunt Bev, who I hadnt seen in 3 years, since my grams funeral. She has a ton of old photos around her house of relatives, and I noticed a beautiful black and white photograph of a baby in a long white gown, with a fairly large head. I immediately guessed that it was her brother who I knew died of hydrocephalus when he was 12. I had never seen a photo of him, and felt sadness because he had to suffer through it because they obviously didn't have shunts back then. He basically lived with it until the pressure in his head was too much on his brain. I also felt very grateful that we
live in this modern age and Lilah is able to have a chance at life because of all the advancements in medical technology. It is sad knowing if she had been born back then, her fate would have been death. I also think it is neat that she has this common bond with a past relative, that had two totally different outcomes, and is a prime example of how far the medical world has come. We should all be grateful for this. It gives me hope for the future too, that something may be done for these kids possibly in utero before the fluid has a chance to do so much brain damage, or even having the ability to reverse brain damage. You never know, if we have come this far in 50 years, imagine another 50. I will probably update in a couple weeks after all these appointments, unless something significant happens between now and then. I am also hoping to post some new pictures of LLAH.