Tuesday, September 28, 2010

"Be still and know that He is God/ Be still and know that He is holy/ Be still, O restless soul of mind"

Finally, Fall has arrived!!! Charlotte, Lilly, and I took a wonderful stroll this morning to bask in the crisp air. I have to say that trying to walk Lilly and push the stroller can be a bit difficult, but it was worth it. The movement puts little Char right to sleep, but I think she likes the fresh air. Ben and I ate lunch on the porch and I put her in her bouncer outside, which she seemed to enjoy greatly.

I meant to tell you all about our UAB visit before now, but the days seem to go by so fast. We went September 20th to Children’s Hospital, so that Charlotte could have a CAT scan to check the ventricle size. Ben and I packed up and headed to Birmingham on Monday morning. We stopped at my Grandparent’s house to eat lunch and let Charlotte meet more of the family. It was such a great time, and my sweet amazing grandmother had prepared things she knew I love: lady peas and a huge fruit salad. I have such awesome family. We then headed to the hospital. I, of course, was nervous as always, but God reminded me of the futility of my anxiety by providing us with a great report. The neurosurgeon informed us that the ventricles had indeed gone down and that all her incisions looked great. And she was up to 6lb 6oz already. The Great Physician has provided, and provided. Why do I worry when such a merciful and mighty God is in control? Our next visit to Children’s is Oct. 27 for an all day affair. I am going back to Birmingham before that (Oct. 8) to attend a seminar on Spina Bifida. I’ll keep you posted on how it all goes.

While I’m on the subject of hospitals and such, I’d like to inform everyone on Charlotte’s latex issues. Children with SB have such a high incidence of latex allergies that they are treated as if they have the allergy, whether we know or not. It’s often called latex precautions. Basically, we have to act like Charlotte is allergic even though we don’t know and keep things containing natural rubber latex (NRL) away from her. I thought latex was many in some hospital supplies but have found that it is in a lot of house hold products. Even things I would never guess, like newspaper print, gum, Band-Aids, pacifiers, and many toys. I have spent a fair amount of time researching items I have purchased or intended to purchase to make sure they do not contain latex. It can be difficult because often the packaging does not say, so I have had to call manufacturers. Like most allergies the first reaction is usually not as severe and often forms a rash. However, continuing exposure causes increasingly worse reactions. I wanted to make family and friends aware of this issue, so we can all try to keep these products away from her.

Now on to life at home…

I really can’t believe we have been home for two weeks and Charlotte is now 4 weeks old. Thursday she will be a month old!!! Well, I survived my mom leaving, though I still miss her desperately and call her all the time. Last week Charlotte and I had some rough moments, but I think we are both getting better at figuring each other out. Tuesday of last week she kept crying, and I was feeling like such a failure. It was one of those moments where she was crying, I was crying, and I was wishing she could just tell me what was the matter. But I finally got her settled down and after talking with my mom and my friend Ann I realized that those kinds of days are normal. Charlotte has bad days just like I do.

The nights have been a little longer as well. That first week with my mom, Charlotte was great. She never fussed going to bed and slept a solid four hours between feedings. I think she was still fatigued from her tough first weeks of life. Now she has bad nights of crying and sometimes only sleeps two hours between feedings. One night recently, I knew she was extremely tired, but every time I tried to put her down she would start crying. I proceeded to call my mom for her all knowing advice. My mom asked me if I had let Charlotte “cry it out”. I proceeded to say yes. She then asked me how long I had let her cry. I replied, “A little under a minute.” I know many of you moms are laughing right now at my definition of letting her cry it out! My mom told me I could let her go a bit longer than a minute and hooray, it worked. She cried and then went right to sleep. This doesn’t always work but on many occasions she just needs to cry for a minute or two before conking out.

The long nights can be pretty fatiguing. Today, I was so tempted to crawl back into bed and almost did…but then she started crying. Alas, I think that is just how it goes in motherhood. Some nights I think “how am I going to make it through?” And then I go to her crib and see my tiny little baby and think, “Well duh, I can do this, I mean look at how fabulous she is.” I’m still exhausted, but she is so cute looking at me with those massive eyes that the 2am diaper change doesn’t seem so bad. I am convinced that that is why God made babies so adorable: so their mom’s would think all those sleepless nights were worth it!!! And how can I complain? I prayed and prayed that she would be a good breast feeder and that she would start packing on the pounds…well ounces. So, if she wants to feed every two hours one night then I should be saying “thank you God” every time I hear here start to cry.

She was pretty tired Monday, because we had several visitors this past weekend. My brother Will and his girlfriend Nadia came Friday and spent the night. It was their first time to meet Charlotte. It was so much fun to have them. Charlotte even let me make it through most of dinner before demanding to be held. I knew Will would make a wonderful Uncle, and he is already so good with her. She loves faces, and I think Nadia’s was fun for her to see. Unlike her pale, blond mom, Nadia is tan with beautiful long, dark hair which seemed to fascinate Charlotte. They left way to soon Saturday morning but we are hoping they come again soon. Justin, Faith, and their daughter Sadie came by later Saturday. How great it was to visit with them, and it was wonderful to have a toddler in the house. It was funny because Sadie did not like her mom holding Charlotte. However, Faith is expecting, so she is hoping that the jealousy is not lasting. I loved seeing Sadie so active and verbal. I still can’t get over the fact that before I know it Charlotte will be there too.

Late Saturday afternoon my grandparents from Dalton came for a visit. After all the morning activities Charlotte slept like a rock in Grammie’s arms. It was wonderful to visit with them and introduce them to their first girl great-grandchild. (though they will have another one in November-Yeah Lia!) I feel so blessed to still have both sets of Grandparents and have them be a part of Charlotte’s life. With Sunday, came another round of visitors. Ben’s grandparents (MiMi and DaDa) and his Aunt Susan came to meet the newest addition to the Barber family. It was another fabulous visit. Charlotte seemed to love the company, and I definitely did. She even tried to stay awake for most of their visit. Every time Charlotte is with extended family, I realize how blessed our family is. We are surrounded by so much love and many, many, prayers. There are still some family members she has yet to meet, and I’m looking forward to more introductions.

You all have been so faithful to pray and encourage Ben and me. Thank you. I’d love your continued prayers for the three of us, but I’d also like to ask you to pray for some friends of ours. Michelle Clark passed away suddenly Sunday evening leaving behind a husband, two young sons, and much family who loved her dearly. She was a member of the Thompson family, all of whom I love dearly. I have cried often these past few days thinking about her family and the great sorrow that surrounds them now. My heart goes out to her sons and husband. I cannot begin to imagine the despair. I find myself asking “Why God?” She was so young, and she had children. I often don’t understand the path that God is leading us on, but I know He is sovereign and good in all things. I am trusting Him to provide for this family that I love. I ask that you pray for Michelle’s family to find peace when life does not make sense, to find comfort when despair is drowning them, to find hope when all seems dark, to feel God’s presence. You all have been such faithful prayer warriors for me, and I ask that you do the same for this family.

Thursday, September 16, 2010

"Homeward bound, Home where my thought's escaping, Home where my music's playing, Home where my love lies waiting silently for me"

Has it really been a week home with Charlotte?! I’m having a hard time believing it. As many of you know, we “roomed-in” at Children’s Hospital with Charlotte last Wednesday. It was not the best night/day of our lives. For most of Thursday morning/afternoon, we thought we were going to have to stay another night…and Ben and I weren’t taking this news well at all. But, God in His grace allowed the doctors to OK our departure. Oh the relief!! Our baby girl would be outside for the first time in her life, and then she would get to see her home. We stopped by my grandparent’s house on the way out, so I could feed her before the rest of our journey. Thank you Granny and Granddaddy! My wonderful grandparents opened up their home to us for two weeks. They gave us a comfy bed, many meals, and encouraging company. It was the hardest two weeks of my life, but I can’t imagine how it would have been had we not had their home as a resting place. God has blessed me with some amazing family!

We finally left Birmingham around 5pm. Charlotte was wonderful during the journey. The car seat seems to lull her to sleep. We arrive at our house with a wonderful greeting committee of Mike, Mary, Beth, my mom, and Lilly (our pup). Charlotte let me show her a little bit of the house before breaking down and demanding to be fed. That night, my mom convinced me to let Charlotte sleep in the crib promising that she would listen out for her. It made me a bit nervous (she looks so tiny compared to that big crib), but I knew I needed rest and that Charlotte was in great hands. The night passed with no surprises and a few sleepy feedings.

My wonderful mom agreed to stay with me for the week. How will I ever repay her?!! She says I’ll pay it forward; do this for Charlotte one day. She has been amazing, and Ben and I are pretty sad and scared that we only have one more day with her help. We always need our parents no matter how old we are. I really don’t know what I would have done without my parents through this trial. They have been such a comfort and source of strength for me. I love you more than words can ever hope to express, Mom and Dad!! My hope is that Charlotte will feel the same love, comfort, and security from Ben and me that I felt with my own parents.

Friday, my wonderful mother accompanied me to the Pediatrician’s office for Charlotte’s first check-up. Her discharge weight was 5lb 10oz and I was hoping that it was close to the same since it had only been a day. The nurse placed her on the scale and she weighed 4lb 9oz. I thought I was going to throw up!!! My mom gave me a look that said “something’s not right.” The Pediatrician checked her and then noticed the weight discrepancy. He assured me that even if I had not fed her at all she couldn’t lose a pound in a day. He then proceeded to weigh her again, she was a nice 5lb 12oz and I felt SO much better. I have worried and worried over her weight and eating habits. That is the hard thing about breastfeeding, I have no idea how much she is actually getting. We go back to the Pediatrician tomorrow to check weight gain. I’m hoping she is at least up to her birth weight of 5lb 15oz. I antagonize a good deal over it, but my mom keeps assuring me that she is looking chubbier and has plenty of dirty diapers.

Speaking of dirty diapers…Charlotte is a “good” baby. She is not super fussy, seems to sleep well, and is fairly predictable with feedings. However, she HATES having her diaper changed. She screams like mad most of the time, which usually forces a little more poop out. The other day it landed straight in my hand!! I think she did it on purpose. :) The only thing that will half way calm her is if we place her on her side. She feels the same about bath time which merely consists of a sponge bath. She is extremely unhappy till we place her on her stomach, and then it is like a switch, calm again. It’s funny how you think you will train your children but before you even realize it, they have trained you.

Another fun fact we have found out about Miss Charlotte is her ease with Lilly. Lilly does not particularly like Charlotte just yet. Really, Lilly is scared of her because of the crying, and I would say she is pretty jealous of all the attention Charlotte receives. However, Charlotte is doing fine with Lilly. Many things will startle her, but Lilly’s constant barrage of barks seems to have little or no effect on Charlotte. This is wonderful to me, because I was extremely worried about how nap time would play out with a dog in the house. I honestly think that Lilly will be a wonderful source of entertainment for Charlotte as she gets older.

I am greatly enjoying life at home. Many have asked me if the change is overwhelming. I have to say that even though life with a baby is a HUGE adjustment (selfishness kinda gets ripped out of you) it’s so much better than the weeks in the hospital. Yes, I am often exhausted from middle of the night feedings, but I’m getting so much more sleep than I did while in Birmingham that I really can’t complain. I’m sure there will be moments that make me frantic. I have no grandiose idea that the road ahead will be easy, but every time I look at her I know that every sleepless night and stressful day are worth it.

Ben said the other night that he still has a hard time believing we are parents. It’s funny; I have fully realized that I am mom to a wonderful baby girl. What I can’t wrap my mind around is that this little baby will grow into a walking toddler, a teenager, an adult. I am scared half to death of her getting older, though everyone keeps assuring me that every part of the journey is fun. I thought before I had children that I really wouldn’t enjoy the “baby phase.” I thought I’d find it boring and be longing for a time when my child was old enough to do crafts and such. I was wrong. I love having a baby. She is so innocent and dependent on Ben and me. I think this is why women have more children; because their child grows up and they miss the sweet simplicity of a baby. I’m sure there will be many moments when I’m praying for her to be old enough to sleep through the night, or tell me why she is crying. But for now, I find this sweet little baby filling my life with such joy.

We are headed back to Children’s on Monday. We will meet with our Neurologist, and Charlotte will have another CAT scan to check the ventricles in her brain. Hopefully, their size will be greatly reduced and the shunt will be performing to standard. I’ll try to keep you all posted with the news.

As always, I thank you for your encouragement, compassion, and prayers. I kept telling my mom and Ben at the hospital, “How am I ever going to thank everyone enough for all their support?” I realize that there aren’t the words to fully express our gratitude. May God bless you for all that you have done. Ben and I have truly seen the love and compassion of Christ displayed in your lives.

Sunday, September 5, 2010

"I get on my knees/ There I am before the love that changes me/ see I don't know how but there's power/ when I get on my knees"

Sunday 4pm
I’m trying to type the world’s fastest blog before I am off to the hospital again. Thursday, after I was discharged we headed off to Children’s for a quick visit with Charlotte. She was doing well though still a bit groggy. At that nights visitation we found out that she might be having the shunt surgery the next morning. I knew all along that this would most likely be the case, but it still was hard. She already had a long incision down her back and bruising from multiple IVs. It just seemed too much to ask this little thing to endure another major surgery. I was a mess most of the night trying to grapple with the reality of another surgery. It is hard to hand your child over to God’s full care even though you know His love for them is infinite. I prayed and prayed for strength and courage for myself and for protection for Charlotte. I know so many of you were praying as well, and I thank you from the bottom of my heart.

Friday morning we found out that the shunt would indeed take place, and we headed off to the hospital at 9am. Ben warned me that Charlotte would be upset because she had not been fed since midnight due to surgery. It was so hard to see her in such distress and be totally helpless, but I knew in my heart that she was in the care of the Great Physician. We followed her down to surgery and then began the waiting process. The surgery went faster than the first, and eventually Dr. Wellens (our wonderful surgeon) came to tell us that she had done well. When I heard the news I broke down once again in relief. I wondered and have continued to wonder how I can ever thank God enough for His mercy. It is endless. Friday night I was actually able to try to feed her (holding her on her side). It was a bit overwhelming for both of us because we were both new to the game but we had some success.

Saturday was a bit better in terms of feeding, but I was utterly exhausted by the end of the night. I know so many of you have probably wondered why I haven’t called or written a blog sooner, but the days seem to be jam packed. My day usually goes from pumping early, then to the hospital till 2pm, then lunch, then pumping, then maybe a 30min break maybe not, then back to the hospital till 10pm. I don’t want to miss a second with my girl. I still choke up every time I see her at the beginning of a visit and when I have to leave. It takes my mom and Ben holding me back not to attend the visitation from 12am till 6am. But they are right; I have to take care of myself so I can fully take care of her.

Speaking of care, I have learned a bit more about how to provide for her these last two days. She is latching on and feeding much better and I’ve figured out more about reading her stats and knowing which leads go where. I’ve also been trying to change her diaper as much as possible because this is a major process. She has to have a fair amount of care in this area because the incision is so close to her bottom. The problem we are facing right now is a bad reaction to the “mud flap” (a plastic flap used to keep stool off her incision). She is developing a bad rash which a nurse warned us can become quite irritated and even bleed. Compared to everything else she has been through I guess it doesn’t seem like much, but I feel like she has already gone through plenty. Please pray that this issue would resolve itself. The other part of her care that I have not learned yet is the In and Out Catheterization. We are hoping that she doesn’t have to have this at home, but it is a definite possibility. Good news is that Charlotte has not had to have them as frequently as of late.

We are hoping that if things continue to go well we might be able to start the rooming in process. This just means we stay at the hospital a night and they teach and train us on Charlotte’s care. Ben and I are both so excited to bring her home though of course we want her to be fully ready. We can’t wait to show her off. However, she has had a rough beginning and we ask that those of you who plan of visiting please refrain for awhile if you have any type of cold or contagious illness. We are also asking that those of you who visit please apply antibacterial lotion before touching or holding her. We will provide it as that is all we seemed to be putting on our hands these days. We are trying to take as many precautions as possible since she is still in a fragile state.

I want to thank you all for your compassion, support, prayers, friendship, and the many things you have done for Ben and me. God has truly blessed us. I don’t know how to thank you properly or enough but know that I appreciate everything from the bottom of my heart, as does Ben.

Sunday 10:45pm
Just got back from the hospital. I was able to feed her around 5pm which was great though she was fussy. Beth, my sister-in-law was able to come which was wonderful. She was able to see Charlotte in a more alert setting. Unfortunately, Beth was not able to hold her because now the only time she can be held is during a feeding. This is so that she can be on her stomach with no diaper covering her rash to allow it to heal faster.

After feeding and changing her I headed back to my Grandmother’s for a quick supper. I wanted to get back to the hospital fairly quickly because our nurse was going to let me bath her. The bath was good for me to learn to do but very miserable for Charlotte who bawled the whole time. After the bath I was able to feed her again. She seemed to eat well though she stayed fussy the entire time. And when we left she was still crying. It was absolutely miserable to leave with her still crying; it broke my heart. We think it is due to the fact that she has to be back on her stomach and the rash on her bottom is causing her pain. However, I fear that I didn’t feed her well enough, or that she is getting sick, or maybe I’m just not doing well at mothering. It is so hard to leave and not know why your baby is upset and not be able to sooth them. I am hoping that tomorrow morning she is doing better and that we get a positive report from all the doctors. As far as coping tonight, I’m going to try and trust God to take care of her like He has done so lovingly thus far. “Be anxious for nothing”

Thursday, September 2, 2010

"Oh where you lay your head tonight, we'll roll away alone, and close on down"

Quick updates while I have a moment. My c-section went well, though I can say it was not my favorite experience. They whisked Charlotte off to another room, but I could hear her cries through the door and how that made my heart sing; to know she was alive and breathing. During my surgery they brought her in for a moment so I could see her. She was perfection in my eyes. So cute with chubby cheeks and a head FULL of hair!!! They finished my surgery around 11:30am, and then I headed to recovery.

I couldn’t wait to get feeling back to my legs, so I could start the process of getting up to get to my girl. They got me to a postpartum room, and I finally got to see her again around 4:30 pm. It was wonderful. However, my day got much harder from there. We found out she would not have surgery till the following morning around 10am, and that she would be in the NICU at Children’s; not UAB where I was. This was quite a blow, because I had planned for her to be in the NICU here at UAB. It is not only just a floor away, but extremely nice with private rooms and 22 hour access. Ben informed me that Children’s NICU was a large room and the visitation hours were much more limited. This was extremely hard to find out the night before Charlotte was to have surgery.

After hearing the news, I started to get upset. This set off a very painful set of events. I’d been having sharp pains in my neck for awhile, but when I started to cry they continued to my right rib cage and made breathing a struggle. Much later with oxygen, several nurses, Ben, and my parents with me things began to calm down. My Father thought I probably had some blood in the area that was making it spasm and the neck pain was referred pain. My parents left so that I could try to get some rest. Sleep didn’t really come and around 3am I began to shake horribly (much like I did during my surgery). I tried to breath calmly knowing if I didn’t it would exacerbate my lung issues. My stats went a bit haywire so they took me off my liquid IV and did a chest x-ray. When they took me off IV I felt much better soon after. Things seemed to be getting under control. But at around 5am they did a CAT scan which sent me my chest back into spasm mode.

All this was very hard, because I knew I needed sleep in order to recover quickly so that my doctors would give me a pass to see Charlotte. That morning my parents came, and once I was feeling better my mom headed to Children’s with Ben while my Dad stayed with me so that I could sleep. I got some much needed rest (thank you Dad, you are the best…my hero) but the day stilled dragged on as we waited on the result of Charlotte’s surgery. Ben finally called me to tell me that all went well. I lost it. It was partly from relief, but mostly the fact that I still couldn’t see her and view with my own eyes that she was OK. It seemed that everyone else was getting to see her and hear her prognosis from the doctors but me. I had carried her for nine months with no separation, and now she seemed a million miles away. And on top of it all I couldn’t cry or my chest would spasm. Fortunately, my dad was there to let me cry however I could and pat me, tell me “no it isn’t fair”, but remind me I would get to see her in a few hours. Once again Dad, you are my hero. I don’t know what I would have done with out you during this process.

Finally I was able to make it to Children’s around 6pm. I not only got to see her but to have her in my lap. She has to stay on her stomach for quite awhile so I had the Boppy pillow around me with her laid across it. Those hours meant the world to me. It seems like these past few days have been both the hardest and best of my life. I can’t get over how beautiful she is. I know by medical standards she has complications, but in her mommy’s eyes there could be nothing more prefect. She is so sweet. She hardly fussed at all while I held her, and she much preferred her face in my hand rather than on the pillow. I wish I could better express the love in my heart for her but I guess all you parents out there know the feeling. It’s a love that you can never fully comprehend or express, but one that makes you better understand the Father’s love for His children.

“Oh my soul rejoice!”

*I wrote the above early yesterday morning but have been unable to post. I wanted to share a few more things.

Right now it is Thursday morning and I am packing up so that I can head to Children’s’ as soon as I am discharged. The visitation hours in the morning are from 9am to 2pm. Unfortunately, I will probably not be able to leave the hospital till around 12pm if I am lucky. This means I miss most of visitation which is killer to me. Every time I have gone to Children’s I’ve had to get a pass from the doctor which takes a VERY long time, so we haven’t gotten to be with her for a full visitation yet.

However, the moments I have had have been wonderful. Last night’s visitation was especially great, because Ben was able to have her in his lap (on the pillow of course). And, seeing her with her daddy meant so much to me. She was so tiny and content under his gaze. I also read her some poetry that I love. My mom swears she recognizes my voice because her eye brows move around when I talk to her. She also seems to like my touch which of course makes me insanely happy. I didn’t want to leave last night (even though I was already close to an hour over my pass limit) because as we were leaving she became so alert. This seems to happen before she eats and then sleep quickly follows after she has food in her tummy. I get so excited when we make eye contact. I know I don’t get to be with her as much as the normal mother and child, so I desperately want her to know me; to know that her father and I are the ones who love her the very most. It’s probably irrational but I worry that she’ll start to think one of the nurses is mom. I told my mom yesterday that it will be awhile before I’ll be able to let others hold her for extended periods of time because I am going to want to make up for all the time I’ve missed.

I’m feeling better now. Those first few days were very hard and I still get extremely worn out but I’m trying to take care of myself and eat solid meals. I know the most important thing I can do for Charlotte is give her milk, so I’m trying to make that happen. We are keeping our fingers crossed that I can begin feeding her Friday, but there are no definite answers yet. Thanks again for all the sweet comments and most especially all the prayers. We are still looking at another possible surgery tomorrow for the shunt, so we’d love if y’all would continue to pray for Charlotte.