Sorry for the delay in posting this morning. I wanted to wait until we visited Gaines and had something to report. When we got here this morning they had just checked his blood gases. They looked really out of whack but the doctor told us that they were adjusting his tube and that should fix it. She said that she didn't really believe the numbers because a baby doesn't usually have that drastic of a change and that they would recheck his gases in a few minutes. When they checked the gases again they were about the same so they decided to do an xray to see where his tube was. I think they are confident that fixing the tube will fix the gases. If not, they will escalate his care. Still, scary to me.
I think this is one of the roller coaster things people are always talking about. I know he is critical but as long as he remains stable I'm ok. Obviously we'd like for him to make progress but after those first 24 hours, stable is a word I'm happy with. Please pray that this is only a tube problem and nothing more.
I got a little upset earlier. This is just SO hard. I know that he is in great hands but it is so hard not to be able to care for your child when he needs it so desperately. I know this sounds crazy but, I was at his bedside looking at him and his hair looked so soft. I so badly wanted to touch it and for some reason I just started to cry. I have a baby that I can't even touch right now (they don't want to over stimulate him). There are no words to explain how hard that is. Put that on top of being away from my other child and everything else I know and it creates a sappy mess.
I'm thankful to be out of the hospital but its also hard. I'm completely lost in a city that isn't my home. PLUS, I am still recovering from having a baby 3 days ago and being on bed rest for 37 days. Everywhere we go here I have to walk and it's tough. The bottoms of my feet are so sore from not having walked on them in so long. My stamina is pretty good but I still get tired easily. This is just a physically and mentally exhausting experience.
I know I just had a pity party for myself and I'm sorry. I feel so guilty whenever I let myself get down. I know that God is going to get us through this. I really do...I trust Him. I just have to keep reminding myself that he's not going to do it according to my timeline or plan. If you can only fit one of us in, pray for Gaines but if you've got a little extra room on your list, I could use a few too.
I am so dang weepy today! I hate not being in control of my emotions and I am not even close today.
Ok...starting fresh...several people have asked about our new mailing address. I certainly don't expect anyone out there to send anything to us but one thing we have learned from this is to let people help. Right now I can't think of anything we need other than your prayers. Anything already sent to the hospital will be put by Gaines bedside. Anything new should go to the new address listed on the side of the blog. The Reese family lives in DC and has offered to be our official mail fairy since we are such vagabonds. Yesterday some one asked us to donate a dollar for the homeless. I wanted to tell him that we were the homeless.
Speaking of walking around here...this is a whole different world for this Alabama girl. We went to this Trader Joe's here yesterday for "groceries". Not quite what I expected. We were able to get the essentials but it stressed me out. I guess Sunday afternoon is a busy time to go but that place was packed. I constantly felt like I was in someones way. Also, I must be really out of date because .1 I took a list and 2. It wasn't on my blackberry.
Also, I've been kind of worried about my clothes. I don't really have much here for warm weather but apparently it doesn't really matter. You don't have to match and its probably better if you don't. Really I think we are just in a kind of trendy part of DC...very nice but lots of cutting edge college folks. I have always maintained that I am cooler than most of the general population (kidding of course) but I don't think I'm even hip enough to live here.
Ok, this is very long and I think I've psyched myself up enough to go back in the NICU. They asked me to leave for the xray and I've been kind of afraid to go back in. Scared of a bad report I guess. Plus I didn't have my act together enough not to cry because they were out of soap or something.
I'm back to being brave. Thanks for "listening" to my blubbering mess. I love you all for your prayers. Please remember Gaines' head ultrasound today. I've been not just praying but begging God for a good result.
Brittany
42 comments:
Don't be too hard on yourself when you get upset and need to have a little pity party for a while- you've been through so much and now are dealing with all the postpartum hormone changes on top of everything else. My first was totally healthy, and I still sat around and cried for days!
You're doing great. We are praying for all of you.
Brittany and Beau,
I don't remember how I stumbled across your blog, but have been reading it since your journey in DC started. I am praying so hard for all of you, especially Gaines and know that GOD will get you through this. Have a pity party whenever you need too because you are only human and emotions are a part of life! Please know that we are praying for you in Trussville, Al!
Stephanie Day
I can't imagine how hard this must be and you are so strong! I remember a friend of mine who had twins in the NICU and a story he shared with me of walking out the door and hitting his knees because he realized he had no control. EVERYTHING is in God's hands and i will pray not only for Gaines, but that you and Beau can have comfort in know this. You and Beau are also in God's hands....
Oh Brittany, you are so allowed to have as many pity parties for yourself as you want! I don't know you but I have been following your blog since you started it and have been amazed at your faith and how positive you two have been throughout this so far.
Brittany....don't be hard on yourself!! You are doing great....hormones are wicked and not to mention stress!! Praying for you guys....and sweet Gaines!!! We miss sweet Reed and cant wait for you all to be home safe and sound!!
Brittany, honey, you just had a BABY! Your hormones are all across the board. Even in the best of situations you'd be moody and be told to rest up. But you have a baby in the NICU in critical care, you are a long way from home and you just spent more than a month in bed- cut yourself some slack!!! :) You are doing AMAZING!
If you remember, my hubby and I worked on a cruise ship when I was pregnant and went into very preterm labor. I had sent all my non-maternity clothes back to the Mainland and all I had was my maternity wardrobe and you don't really want to wear that after giving birth. My dear friend sent me an Old Navy gift card and I pretty much lived in "roomy comfy clothes" (sadly, 20 months later my pre-pregnancy wardrobe still doesn't quite fit-lol!) add to it that it was hot and humid outside and freezing in the NICU - I was just a fashion mess. I figured that if I couldn't bend down to shave my legs yet, then I probably shouldn't be going anywhere that I care that I have unshaven legs. :) And no one, no one, should judge a NICU mom based on her clothing appearance, really. Take a good look at what Sarah wears the next time she visits, she's not a trendy college student either, despite the address. It's hard though, when you are already feeling so out of sorts. I had a similar experience after giving birth with someone soliticing money for charity and I wanted to scream out "But WE ARE A charity case!" That Trader Joe's is always insanely busy on weekends, and well, pretty much always. There is a Safeway in the basement of the Watergate that's much less crowded. But really, take Sarah up on her offer and let her go get you some REAL groceries. It took us a week and a half to make it to Costco and spoonfuls of peanut butter accounted for way too many meals during that bleary early days time after being discharged. I think we lived off Costco Chicken Salad for weeks.
it's so hard not to be able to touch your own baby. It just seems cruel. Can you talk to him? Our March of Dimes coordinator gave us a digital recorder that we recorded us reading children's stories on it for the nurses to play when we weren't at the hospital. it was very comforting for us to know that Cadence could hear our voices when we were away from the hospital. Take it easy and rest up. walk slow. Take breaks, You'll build up your strength and energy as time goes on. Don't do too much though, Gaines needs a healthy mommy.
Sorry to have hi-jacked your post with my own blubberings. Please don't be hard on yourself. Prayers going up for all the Daniel's family members.
Let me just say that you are NORMAL...this is HARD! You have so much on your plate right now and it is OK to be a blubbering mess at times! Just know that you are being prayed for and that God is still on the throne and Gaines and YOU too are in His hands. The NICU is indeed a roller coaster. I've had 3 in there! Only one of my children came home with us. I know what it feels like to want to touch your baby, but can't and I know what it feels like to be out of the hospital while your child is still there. All this to say that you are understood and being prayed f
This is so hard for me to read your post today because I know those emotions all too well. I want you to know that you are totally normal and it is okay to be sad. Your family is in a crisis and your world is turned upside down. You can trust God 100% and still have all the emotions you are experiencing. It means you are a good mom and love your baby. I wish I could hug you and talk to you in person. You don't know me, but we are a part of the same family, the family of God :) I am praying for your family!
I don't remember how I found your blog either - but I've been lurking and following all along.
Please don't apologize for your pity party girl, you deserve one.
I'm praying for you, Gaines and the rest of your family!
Go ahead and have a pity party any time you want! It's okay!
Those hormones are not helping matters either....even when you have a baby not in NICU, pity parties can be expected, but in your case...totally understandable!
I have room to pray for Gaines, you, Beau, Reed, Jack and the rest of your sweet family!
I honored to be able to pray!
Arlene
Girl, your emotional, you just had a baby, your hormones are wacky right now, that's part of the messy life we were given. I would cry too if I were you. Heck somedays the stupidest things get me going like having to move the carpet runner all the time, day after day it moves out of place. It's natural. Prayers are going up for you two.
Brittany, you're doing great - these are NOT normal circumstances! And you ARE going to make it through all the ups, downs, and all-arounds. Praying specifically for a good ultrasound report today. Thanks for keeping us posted.
Praying in Oneonta
Brittany,
Like so many have already said, go ahead and have that pity party. You and Beau, both, are more than entitled. But you, especially, have every reason for moodiness right now. Nearly any woman who has given birth, full term or not, can share stories of the strange emotional swings during the first week or two after birth (sometimes much longer). Just considering what your body has been through in the last week alone is reason enough to make it completely understandable, without even considering all the extra stress of having a NICU baby. You are handling it all well!
We continue to pray for baby Gaines, and are hopeful for a positive report from his ultrasound.
Yes, DC is definitely a walking city. Even if you had a vehicle to drive around, you'd still find yourself walking a lot, because parking is scarce. Try to make use of the metro and buses as much as you can. Please try hard not to overdo in these early days. Hang in there!
Praying and sending love and hugs from Kentucky!!
Still praying for all of you!!!
Brit - It is very ok to let go and get upset about this whole process. It is so tough to want to hold your baby and touch him when you can't. I will pray that each step of this gets a little easier and you know that with time, this will all feel like a dream, but right now, it just stinks!! I love you guys and my heart hurts that you are going through this too. Just lean on each other and call us anytime you need to! Maddie tells mom that she loves her so much that it's to the moon and back, so with that in mind . . .
2 the moon and back - Kelly
Thank you for letting us lift you up in prayer while you are feeling so upset and out of sorts. What a blessing it is for us to do that! You are totally in your rights to have a meltdown and a pity party! I was a basketcase for weeks after all my kids were born, and they were all healthy and full term. I pray you will be able to rest in God's hands and let us cover you with prayers. Praying for good reports from Gaines' ultrasound later today!
From one Alabama girl to another... (I grew up in Prattville and now live in Huntsville.)
My heart just aches for you. My second one had a very short stay in the NICU and it was agony just those few hours of not being able to hold or touch him. I cannot even imagine what you are feeling. My thoughts and prayers are with you and your beautiful family.
Mary
Praying for ALL of you!!!!! I am so sorry that you are going through all of this. I am praying that God will carry you guys through this and help Gaines little body to develop and heal of any infections very quickly so you can all come home to Montgomery and to your family and life here. Everyone here and many others everywhere else are praying for you all. Love ya!
also:
Please don't worry about the wacky emotions, they are normal under any post partum circumstances and especially yours. I had them after each of my NORMAL deliveries and babies
Brittany,
After I read your post, this verse came to mind:
2 Corinthians 12:9-10
"But He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."
God doesn't require you to be strong. He asks that you rest on Him, let Him carry your burdens. It's okay that you are feeling weak, for His power is made perfect in weakness!
Praying for you and your recovery, your caring husband, your darling toddler, and your precious little baby boy.
I am praying for y'all so much! I know the Lord will bring you through this for His glory and your good.
You go ahead and have that pity party and many more. We are all here rooting for you and your family. My second son is 6 months old and when he's not feeling well I get teary and weepy. It's hard to see the little being that you created and not be able to help him. When he was first born we spent 3 nights in the hospital where he was in an incubator type thing. I cried and cried and cried over not being able to hold and comfort him. The doctor remined me that I was only a few days post partum and that the overwhelming emtotions were completely normal. Don't be hard on yourself, allow the emotions to come naturally and rest assured that there are many people praying for you and your family.
Hon you have every reason in the world to be scared,weepy,upset and honestly any other feeling that you have right now! I'm praying for you and for Gaines!!!!!!! Praying that his tube can be adjusted and his gases improve and for his scan today...sending love your way!
My gracious, you can have a pity party anytime you feel like it. You've been brave for far too long! I'm praying Isaiah 40:29 for you. "He gives strength to the weary." I am asking him to give you and Beau strength for today and rest for tonight. I'm praying his healing hand on Gaines for good test results on his sonogram. Prayers continue from Texas.
Brittany,
I almost didn't post because everybody has already posted everything I would say, but I'll say it anyway.
Girl, you just had a baby! Your hormones are wacky. And said baby is in the NICU! Your emotions are wacky. And you're not at home.
I think you're holding together fabulously for all of that. You're doing so much better than I could hope to if in the same situation.
Thank you for being so transparent. I appreciate knowing how to pray for you guys.
Katie
What you are going through is completely normal. Not to mention your are having to do deal with post pardom hormones. On top of that, far far far away from home.
When I visited DC, the closest place I found to sourthern food is Sweet Georgia Brown's, it is near the capitol, if you ever want to venture out for a dinner. It is a fancy, or fancy for me anyway.
You will get through this. I can promise that. Continue to lean on Him and Beau. We will continue to lift you in prayers and thoughts.
You are an amazing person already for being able to get through this as far as you have. I don't know how I would have acted.
You're a mess and you deserve to be. You're 3 days post-delivery with a very sick baby. We'd all be worried if you WEREN'T falling to pieces every once in a while. Please come on here & post your worries, your VERY specific worries so that we can lift them straight up for you. We've carried you this far and certainly have the time to pray for ALL of you. Praying for your stamina, peace, healing, Gaines lungs and NO BRAIN BLEEDS, Beau's continued love, support, and understanding of you, and for your sweet Reid.
Just keep telling us what you need....we're here to pray!
Jackson, Penni, Thomas, & Alex
I just started reading your Blog this morning and your story has touched my heart. I will be praying for your sweet baby boy, you and your husband as y'all go through this difficult time. Rest in God's grace. He will carry you through this hard time in D.C.
Allison
Oh, Dear Brittany,
I'm so glad you took the time to honestly write all you were feeling. I imagine keeping it all in would only make it worse! I think you are being so strong though. With all the crazy details you and Beau are having to deal with, I am praising God for holding you up, because I don't even know what I'd do if it were me. I'll be praying that the city itself can start to feel more normal and comfortable for you and that your body can heal, strengthen and adjust quickly! I'm mostly praying for Gaines though, that his ultrasound goes great and that his blood gases improve!!!
You are doing such a great job. Keep trusting Jesus, as you have been, and never be afraid to vent how you're feeling. It helps me know how to pray for you better!
Ruthie, in Ohio
Brittany,
I know all these people have already said it and probably said it much better than I will but you are entitled to a pity party! You have been so strong for such a long time. And besides that, you just had a baby! There wouldn't be anything normal going on in your body whether Gaines was in NICU or not! Keep the faith and know that many, many prayers are going on for all of you continously.
Cary in Birmingham
Don't feel bad for being emotional! Don't feel guilty for letting yourself "get down"! This is part of the rollercoaster that is the NICU- your emotions are certainly involved, and God knows that! It is 100% okay and normal to cry easily and frequently- that's the toll having a baby in the NICU takes on your emotions. I cried for pretty much a week straight after our son was born and placed in the NICU! :)
Also, I wanted to encourage you that it does get a little easier. After the first couple/few critical weeks, Gaines will get more consistently stable. The worry shifts from really serious things (like ventilators and blood gases) to things like how much of his bottle did he drink, how much did his diaper weigh, etc. It will get better as Gaines gets older and grows a little. Hang in there!
Prayers!!!
You and Beau are amazingly strong through all of this and have every right to cry, stomp your feet, shout or whatever it is that will help you get through it!! We are praying for you all!! I pray that the xray goes well and the head ultrasound too. We're sending lots of love, prayers and positive thoughts your way.
Love,
Sara Blakeney
I feel like I have written that exact same post, it was just a little over two years ago. Reading your last few entries really brought me back to the 85 days we spent in the NICU. Know that there are people out there who know exactly what you are dealing with. Pity parties are totally allowed and you shouldn't feel bad. You have to let it all out at some point so that you can build yourself back up. For me, it was always on the drive back home when I was by myself but by the time I got home I felt better. I was able to cry and yell and everything else and then I was able to regroup.
Also, know that you just being in the room with Gaines is taking care of him. He knows when his mommy is there even if you can't touch him or do the other things you would do for your child. Just being there next to him is what he needs. I used to listen to the song "Stand" by Rascal Flats and it really helped me. It has a good message that I felt gave me strength. Hang in there and know that there are a ton of people praying for Gaines, you, and your family.
Preemie mom,
Lauren Hess
"In my desperation I prayed, and the Lord listened;he saved me from all my troubles." Psalm 34:5-7
We are praying!
Oh honey, this is all totally normal. The stress, the fatigue, the crying...it is a process that all brand new moms with babies in ICU go through. Don't feel guilty or beat yourself up about it (and this is coming from someone who can't have children, for the record). Just know that it's all a part of the process, and better things are ahead. Rest as much as you can and know that people are thinking of you and praying for you and Gaines. You may not be able to hold him right now, but your heavenly father can and is. He is in good hands. He is going to be ok, and so are you.
Hugs from Mobile, Alabama
Kelli @ ugottafriend.com
Oh lawd child, I have sobbed while reading this entire blog. What I would like is to gather all the bloggers and come to DC and be with you!!!!!!! Somehow I feel like your so alone and although you have not a clue who most of the people are on here, we have truly grown to love your family. I have never wanted to hug someone so badly. However, all we can do is continue to pray for strength and healing both for you and Baby Gaines (even if its little baby steps). Please know I am praying for you and your family day and night!!
Michelle from Prattville, AL
I can relate to you in so many ways. I had a two year old daughter when I delivered my 30 week old triplets. I remember the agony of not be able to hold them or touch them, and watching them struggle through so many days of breathing tubes. I felt like I had done this to them and it was all my fault. I was on strict bed rest for seven months, so I completely relate to how tired you are now. It took me about a year to start to feel back on my feet again, in regards to energy.
Our triplets are two now and they are all healthy and wonderful babies. I just want to let you know that we will pray for you with all our might. I know how painful it is. We were in a city that was far from our home as well. And I was torn between two places, with my daughter and with my NICU babies (our nicu would not allow two year olds in). You are in my heart and my prayers! You will get through this. You are stronger than you know and realize. I know every day is a minute to minute process. And I know the agony of everytime you walk in to that NICU wondering what you're going to find. Will they be better? Will they be worse? Will they be the same? Will I get to touch them today? Please know that you are not alone.
Hey Brittany & Beau,
Reed is taking a nap right now. He was very tired from playing with James and Granddaddy. We went to the golf course and rode around then to B.K. and home to eat and take a nap. We had to work hard to keep him awake on the golf cart. Granddaddy got to show him off to some of his friends and got some more prayer warriors! It is very warm here now and I wanted to know if Reed can go swimming later on. We aren't planning that for today, but just in case. Got some more pictures and I will send them later. We love you all and are praying every minute. Gaines is so pretty with so much hair! We can't wait to see all of you.
Love,
Aunt Sherry
I just had to laugh at Amanda's comment about looking at what I wear around this neighborhood. Brittany, come hang out with my family here and you *will* feel put together and hip. :) (Coming from the mama who's wearing cargo pants, birkenstocks, and a 5 years old Old Navy t-shirt today.) And yeah, that Trader Joe's can be a zoo on the weekends -- we try to go when it opens at 9 or after dinner, or during the week late afternoon isn't bad at all.
Praying hard all day that you guys got some good news. It was a rare day that I *didn't* cry while walking back and forth from that NICU.
Hey Brittany. i first heard about you from the Footprints Ministry. I've been checking your blog and pray for a while now. I just wanted you to know I made time for all 4 of you in my prayers!
Praying for your sweet baby and for both of you....
Teresa
Shreveport, LA
Our Samuel was born at 26 weeks and had bilateral grade 4 bleeds. We were on that roller coaster just 3 years ago! Aching to touch him. Feeling robbed of all the newborn things. Living by desats, blood gases, braidys, inputs, outputs,residuals, cc's and gram's!( and for mom....pumping!) It is like learning a new language!:)Truly, who ever heard of weighing diapers!!??? We are on the other side of the NICU now....and can testify to the faithfulness of God and the amazing power of prayer. We hung on to Ps 121....and Hebrews 11:1.....and especially "With God all things are possible!" We shared these with Samuel each day. He is a healthy , happy(actually joyful) 3 year old today. We are so thankful! There is hope...always. Your feelings are normal....so normal. I would encourage you to write them in a diary for Gaines.(and you) A fellow NICU mom got me a NICU diary. (www.preemie.com) It was perfect.as it had milestones (weight,breathing,meds, procedures, nurses,etc)specifically for a preemie that a term baby- babybook would not have. I had to end up buying another one...as Samuel was in the NICU 97 days. It was therapy for me at the time. Samuel and even his bride will enjoy it someday!
Obviously, from the scatteredness of my post....I have never posted in my life. However, I have such a heart for NICU moms. God Bless you.........
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