So I had a long and eventful week to say the least. I barely have a minute to sleep and breathe let alone blog. As I previously wrote, Lilah had her Occupational Therapy appointment on Wednesday, followed by a check-up at her pediatricians. Her Occupational Therapist is a real sweet lady named Susan I instantly liked her, and she was so good with Lilah. Right off the bat she asked me if I had any concerns, and I told her the only thing was how she stiffened up her legs, and didn't seem to bend them in a fetal position. She said this was a totally normal preemie thing. When they come out early they haven't quite learned how to be in that fetal position, she was born before she ran out of room, so her arms and legs were outstretched. She told me that everytime I caught her doing this, gently push them into the fetal position, this basically trains the brain to do it on it's own. She had a long list of milestones that we would check off as she did them. She has accomplished a couple of them already which is good since technically she is only a week. That is the age she kept associating with Lilah because that is how old she would of been if she had been born on time. That is why they will give her a couple month window as far as reaching her milestones. I told her that the doc gave her a 50 to 60% chance of Cerebral Palsy, so I am sure she will be looking for signs of that as soon as she can. So far she said she didn't see anything that would cause her concern. She set up an appointment for the following week and left. I sat around for a couple hours then started to get ready for her doc appointment. This in itself is no easy task. I had to make three trips to the car to carry everything I needed for her. Thankfully Josh was able to come with me, because it's not like
I can make three trips to the car once I arrive at the docs. The previous couple of days I had been worried about her because she seemed extra fussy and gassy. She was not eating nearly as much as she was when she first came home. My biggest fear was that she was not going to be able to gain weight while she was at home. I had never been to this pediatrician before, I had to switch all my doctors when Josh was laid off because all the docs we had gone to won't except MaineCare. They are affiliated with Maine Med the hospital I gave birth at. Dr. Landes is the name of her doc. I like her a lot she is friendly and took the time to answer all my questions thouroughly. I was also pleased to find out that she already had Lilah's history there in the computers and pretty much knew everything about her. It saved a lot of time explaining things, I'm sure. Since all the docs are affiliated with Maine Med, they all communicate with each other on a regular basis. She knew when all her follow-up appointments were, and with who. The same with her visting nurse, OT, and PT. They also talk to her docs and to each other, and figure out the best plan of action. This also means no refferals, beacuse again they're affiliated. The nurse weighed her, and I was relieved to see that she weighed 7 pounds, she was 6 pounds 10 ounces when she was weighed by the vistiting nurse exactly one week prior. I mentioned the lack of appetite, and the bad gas pains she seems to get. I mean sometimes she seems like she is in excrutiating pain. She said newborns go through spells where their appetite slows down considerably. She also mentioned how the hot weather can sometimes make them eat less, the past couple days were in the upper 80's. She said as long as she's passing the gas, then she will be ok, it is when they don't pass it that it can pose a problem. I also told her that she only goes to the bathroom every couple days or so, and by the time that comes around she is really uncomfortable, she said this is because preemies haven't fully developed the stomach muscles that help push everything out, so it may be harder for her to go. She also has a herniated belly button, which she said will get better on it's own, and it may get worse before it gets better. I always thought her belly button looked funny, but I just thought she just had an outie. She showed me her growth on the charts, and she isn't even on it ( : but she said as long as she is following her own growth curve it is fine, and usually you will see them on the charts at 6 months to a year. She estimated that if she were born on time, she would be in the 50 percentile which would be perfect. Lilah was given her immunizations, so now she is up to date. A hip ultrasound was ordered by Dr. Landes because of her extreme breech position, she said while they felt ok, she wanted to make sure. She said considering all that she has been through she looks great.





The next day was Physical Therapy, and she was scheduled to come around 11:30. Her name is Lisa, and I didn't like her as much as her OT, she wasn't nearly as friendly, she was pretty much all business. She was excellent with Lilah though, and that is all I care about. She noticed that her hamstrings were tight, and that her hips felt ok but seemed a bit shallow. She showed me many exercises to do to loosen everything up, and to get the hip to rest nicely in the socket. This includes laying her on her tummy and puttin her legs in the froggy postition to help the hips. She also told me to roll up a blanket and put it behind her back while she is laying sideways. This helps the hips also. Both the OT and PT discussed with me exercices to strengthen her neck muscles so she will be able to hold her head up ok. This involves putting her on her tummy and putting an object in front of her head to try to get her to lift her head and look at it. It also helps when she is awake, to sit her up right on my lap, and not support her head, so she will try to keep it up herself. She has been doing a pretty good job at this. The OT and PT were going to speak amongst themselves to determine how often they would be coming in. At first they discussed alternating every week, but after evaluating her thought it would be best that they both come in once a week. This is also subject to change throughout the upcoming months, as seen fit. They told me that I'm the boss and if I feel it is too much, or to intrusive, I can ask them to cut back. If I feel she has had enough therapy for the day, or it seems to be stressing her out I have the right to have them stop. I asked them to estimate how long they would be coming in for, and she said they will be coming until they get her mobile, which pretty much means walking (if that is realistic for her). So all in all a busy week for miss Lilah.





Off the topic of Lilah for a moment, I wanted to mention the loss of my dear cat Ginger. Josh found her on the side of the road on his way to work Monday morning, apparently she had been hit by a car. When Josh called me with the news I was so devastated, I had never had an animal that I cared so much for, it also felt like another blow on top of everything else. My first instinct was to spare my children the pain, so I told him that I didn't want to tell them, that we would just say she ran away. Of course after I thought about it I knew we would have to tell them. It would of been cruel for them to constantly wonder where she was, and when she was coming back. In telling them, it would give them closure, they could grieve and move on. I thought it would be nice that we could bury her in the back yard, and they would be able to "visit" her whenever they felt sad. I had the worst feeling in the pit of my stomach all day knowing we would have to tell then when Josh came home. I wanted to leave and leave him to do the dirty work, because I can't stand seeing them upset. I knew it would be the hardest on Chevelle, because she is super sensitive, and a huge animal lover. She cries when an animal she barely knows dies. I won't go into details, but it was gut wrenching to witness their reaction, and I hope it is a long long time before I have to do that again. I knew after they buried her, that it was a good lesson on grief and death, and that it is a lesson everyone has to learn at some point in their lives. I unfortunately, have known from a very early age about pain and loss, so of course I wanted to keep that from them as long as possible. Most people think I could write the book on grief, but in my oppinion it is the complete opposite. I am the type that puts it in the back of my mind, doesn't think about it or talk about it, and I pretty much pretend it never happened. I know this is so unhealthy, but believe me this is the only way I get through my days. That and finding sick humor in everything ( : I am grateful my kids were able to experience and go through the normal stages of grieving.



On a lighter note, it was Memorial Day weekend this weekend, and the in-laws came up. We had a cookout yesterday, with family and friends, and it was just a fun relaxing day. Lilah had her first trip outside, if you don't count the trip home from the hospital and to the docs. I figured the fresh air would do her good. I couldn't tell if she enjoyed it or not, because she slept through the whole thing. Memorial day we had another cook out because Kristie and Kate, and my bro-in-law and father-in-law came up. It was another beautiful day, and Josh was able to be there, so that was a plus. It was a day that made you feel grateful for family and friends, and lucky that we have such a wonderful support system. I have included some pics of her first big outing and holiday (that she was present for). Lilah has a busy week full of therapy and appointments, so I will try to blog at the end of the week to catch everybody up.





SHE LOVES THE OUTDOORS, SHE'S SMILING ( :










AUNTIE KRISTIN HOLDING HER

ALL DRESSED UP AS A BALLERINA ON MEMORIAL DAY LOL

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.

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 ( :

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!