Lilah is Home!!

After 54 days in the NICU, we finally were able to bring Lilah home. Josh met me at the hospital Tuesday in hopes of being there when they discharged Lilah. I brought her a cute little winnie the pooh outfit to go home in. She was wide awake when I got there so I got to spend some nice quality time while waiting for all the steps we had to go through before discharge. I had a feeling it would take awhile because everytime I have been in a hospital or my kids, it seems like it takes forever to be discharged. They had to go over the medicine instructions again and she had to get one last exam by the neonatologist on call. Dr. Medlin happened to be the one, and I like her a lot she is a real sweet lady. The nurse went over the signs to look for in case of shunt failure, and they gave me a bunch of stuff ot take home, diapers, formula, wipes, pacifiers, bottles, blankets lol I left with two giant bags full. I also had to wait for the car seat coordinator to get there to show me how to properly install the car seat and travel with the medical equiptment. I was supposed to have this done the previous day, but I had forgotten my car seat base, so they had to do this that morning. She came down with me and put the base in, then she told me to put the travel size oxygen under the seat, and buckle the moniter into the front seat with me. They do this for two reason, the first is in case you get in an accident, they don't want a heavy monitor slamming around hurting anyone, and second is because they want it to be in sight of you so you can monitor the baby. Dr. Medlin gave me the dischrge papers which had specific instructions on who I needed to call for follow-up appointments, this was really helpful because there is quita a few of them and I didn't want to forget anything. She wrote down all the phone numbers and when I had to see them. She also made me a month worth of copies of a daily medication list. It has the list of all her meds for the day under the time she's supposed to take them, then when I administer them I just cross it off. It makes it go smoother, and that way I will be sure of what I gave her. So the time finally came to take her home, unfortunately Josh had to take off back to work, so I started feeling a little overwhelmed and emotional because they left me to hook her up to the oxygen and her monitor and everything and I was afraid I would screw something up. I also was being hit with the reality that this is it you're taking her home and the responsibility of making sure she's healthy and safe falls on you, and not a bunch of docs and nurses. The nurse helped me carry the enormous cart of stuff I had down to the car, and once I got in the car and started driving I felt a lot better.

LAST PIC IN HER HOSPITAL CRIB

GETTING READY TO GO HOME!!

GETTIN READY FOR THE CAR RIDE HOME

Kristin met me at the house to help me unload all her things. My niece Jenna was there and my nephew Jack. This was the first time they saw her. It was cute the way they interacted with her. My dog Lulu came over and sniffed her a million times, but that was it. I set up her portable crib in my bedroom next to my bed, so I could monitor her in the night.

PIC OF HER NURSERY THAT HAS BEEN READY FOR HER FOR MONTHS LOL

PICTURE OF HER FIRST TIME IN HER PORTABLE CRIB

It was a strange feeling knowing I could just pick her up whenever I wanted and feed her and change her, and do all the things I have been waiting for for almost two months. She did amazing her first night I set my alarm for every three hours to wake her up and feed her. This was one of the discharge instructions, that she eat evey three to four hours, since she is on a 3, 6, 9 ,12 med schedule I figured it's just easier to feed her every three. I put the meds in just a little bit of breast milk, so she will drink it all while she is hungry, then when she finishes that I give her the rest of her feeding. It is quite tiring doing all this, administering meds, feeding and changing her, then pumping after I out her back to bed, so basically everytime I get up with her I am up for a good 45 minutes every three hours. Trust me though I am NOT complaing, I am so happy that I get the oppurtunity to do all the normal mom stuff. The day she came home the visting nurse agency called and set up an appointment the following day. She came in and did vitals and asked questions on how she is doing, how much she is pooping, eating, etc. She weighed her and she is up to 6 pounds 10 ounces, a growing girl! She will be coming once a week to check on her progress. She also informed me that the OT and PT would be contacting me shortly to set up appts. After she left I called and made all her follow-up appointments. She has to see the pediatrician in a week, a neonatologist in two weeks, the pulmonary doc in two weeks, the neurosurgeon in two weeks for a shunt check-up, and a cardiologist in 6 months. Lilah will have a busy schedule for the next couple months lol. I was dissapointed when I called the pulmonary doctor, becase they will ultimately decide when she gets off the O2 and the diuretic medicatation, and they couldn't fit her in for the two week follow-up, we're looking at about a month. It is such a pain having her hooked up to all this equiptment. I have to wheel this heavy tank around, just to go in the other room, and I have to move her monitor back and forth also. The neo doc discussed her being on the O2 wuth m before I left. She explained that most parents worry that they are using oxygen as a crutch, or that their child will become addicted to it, and she stated that it is in fact the complete opposite. Being on the oxygen will help her not be on the oxygen essentially. It helps to develop brain tissue, and lung tissue, and muscle tissue. She is on such a minor amount. She compared it by saying that if you or I were admitted into the hospital needing oxygen, we would be on 6000 cc's and she is only on 25. Here is a picture of her annoying equiptment below:

OXYGEN TANK

OXYGEN MONITOR

Lilah's second night home was a little more rough, she was whining and grunting until about 1 in the morning, it almost seemed like she was in pain. I think she might have a had a little tummy ache, because in the morning after she went to the bathroom she seemed a little more comfortable. Yesterday the OT called to set up an appointment. She asked me to pick a day that was the most convenient and that would be the day she came every week. I told he it didn't matter since I was pretty much available anyday, so we decided on Wednesday. She will alternate every week with the PT. I am looking forward to meeting with them, and it is reassuring that I will have a professional to evaluate her, and know if there seems to be something "wrong" then we can get to work helping her with it as soon as possible. Other then being a very exhausted mommy, she is such a sweet baby, when she is alert and looking around, she is so cute. She always has an amused look on her face, and she seems to be taking everything in. She has also been smiling too. It seems weird to see her smiling and looking so alert when I just brought her home, but I have to remember she is almost two months old, she is not the brand new baby you usually encounter when you come home with one. I am sad that I missed being a part of every second of those two months, but I am trying my hardest to make up for it, and I will have the rest of my life with her so what is two months in the grand scheme of things lol Unless something significant happens I will probably post Wednesday after her OT appointment and doc appointment to let everyone know how they went.