Life's a roller coaster

This'll be short and sweet (like me! haha) because I'm pretty exhausted. Quick update on June: she is back on the CPAP and doing great. She just wasn't ready for the cannula. They will try again Monday. They are also concerned she has another infection. They took bloodwork today and we're anxiously awaiting the results. Promise to update when we know something!

And now a prayer request -- my cousin, Britni, is in labor with her precious little girl right now. Hadlei Grace will be born with Hypoplastic Left Heart Syndrome. This basically means only half of her heart developed. She will have an extremely difficult time, and will face open heart surgery within just a few days after birth. I am on pins and needles, as is the rest of our family, so we would just appreciate your thoughts and prayers for Hadlei and her mama, grandparents and aunt.

Five weeks ago...

Five weeks ago this coming Wednesday, we were told our baby had a greater chance of death than she did of life. Then she was diagnosed with a grade 3 brain bleed and fought pneumonia. Two weeks ago this coming Wednesday, she stopped breathing a few times. Things did not look good and Michael and I hit our knees, begging God to either save our daughter, or to prepare our hearts if it was His plan to call her home to Him.

Today, I gave our very alert, breathing easily, wiggly little miracle her very first bath in a tiny tub. She grasped my finger as she sucked her pacifier and we fell asleep together with her snuggled up in the blankets.



I didn't take my digital camera with me to the hospital today, but I did catch a few shots with her from the disposable camera that we keep in her room. I even got a picture of her with our favorite day nurse, Carrie!

She smiled at me today! I was thrilled. I cried, of course. She was so alert. Her eyes were wide open and she was wiggling around, looking at everything she could lay her eyes on.

I have to tell you, if you have a storm you are facing -- take it to Jesus. If you have something you're unsure of in your life -- take it to Jesus. He will make any uncertainty disappear. He will heal all of your hurts and wounds. If you have a burden you are carrying, remember that He's the same today as He was before that burden appeared. There is NOTHING too big for God. ALL things are possible!

One month old!

Here's a picture of June Claire's bulletin board. Do you see what I see?



She's THREE POUNDS!

JC broke through the three pound mark on her one month birthday! We're SO thrilled. And not only did she break three pounds...



...but the decision was made to put her back on the nasal CPAP today (that's the contraption over her face and nose). Her very first blood gas (a blood test they do to see how well the breathing accompaniment is working for the baby) was BETTER than the last one they did with the breathing tube! That's amazing! By the way -- that small orange tube you see going into her mouth is her feeding tube. She is back up on full feeds, or 26 mL every 3 hours. When she is on the ventilator, the tube goes into her nose.

She is fighting the pneumonia well, and they are pleased with the progress she's made. No other mention of spinal meningitis has been made, but I will ask them about it when I go over there in the morning. She is also becoming more and more alert, which is really nice. Unfortunately, every time I get to hold her she snuggles right up and sleeps -- only to wake up the minute they put her back in her isolette! Cheeky little girl! ;)

I love these next two pictures because her eyes are slightly open.




See that little embroidered angel sitting on June Claire's message board? That's the angel that was created and is selling for her. A wonderful, wonderful woman who owns an online embroidery company (www.addiepearldesigns.com), and my oldest sisters grandmother, designed this specifically for June Claire. If I'm not mistaken, a hummingbird has also been created now, but from someone else. We are so honored to have these people thinking of us like that. Anyway, my point was to tell ya'll that people have been buying these and praying over them, and we're starting to get them in the mail. We have that one up there and there are more that I need to put up. I think it's so wonderful to have prayers surrounding JC like that! Thank you ALL so much for all your thoughts and prayers, and all that you've done!

Losing weight

I am kicking off a big diet regimen this week. When I got married, I was at my heaviest EVER. That's what three months of living in England and then returning to the States for the last 8 weeks before your wedding and having all the food you craved at your disposal will do to you! Oh, that and having no self control...pretty much EVER. So I gained about 30 pounds in those 8 weeks. The wedding happened, moved back to England two weeks later...and promptly lost those 30 pounds plus another 40ish. That put me at my lowest weight I can ever remember, and boy did I feel GOOD! Theeen...I started having health problems and I gained 20 pounds. Theeen....I got pregnant with Sara. I did so well -- when we moved back to the States at 32 weeks, I had only gained about 20 pounds.

Then. *dum de dum dum DUM....*

I got pre-eclampsia. Evil, evil disease. Between 35 weeks and the day I delievered (39 weeks 6 days) I gained TWENTY-NINE pounds. Oh my. The day I delivered I weighed about one pound less than I did at our wedding.

And I never lost it. At one point I had lost 20 pounds, but then I gained it all back. There were two failed pregnancies between Sara's birth (September 2007) and when I got pregnant with June Claire (October 2009), so by the time I got pregnant with JC, I was just four pounds down from my highest weight.

(Understand all that poundage lingo? I'm too scared to put my real weight numbers out there!)

I gained two pounds with June, and when I went for my two week appointment, I was 17 pounds down from my highest weight! I was so excited and decided to keep it up. I have slipped plenty of times in the two weeks since that appointment, so I'm not really expecting a loss tomorrow at my 4 week follow-up. But today I'm starting Weight Watchers (how awesome is it that they have a program for nursing mothers?!) and along with that, I'll be posting weekly about my progress, what meals are working for me, recipe ideas, etc. Honestly, it's going to be a lot of work since we're still at the RMH -- we're on our own for breakfast, lunch is sometimes provided and supper is almost always provided. What that means is I can't accurately count the points for those meals that are provided, but I will give it a shot, for sure!

And exercise -- luckily for me, we get free passes to the YMCA, so we'll be taking advantage of that. I went to get a jogging stroller yesterday, but BRU was out so I'm hoping they'll have that in on Wednesday. When I get the new jogger, we'll be running as a family each day. I can't wait -- I think I'll love that! There are several lakes here and sidewalks are EVERYWHERE...so exercising shouldn't be a problem.

Anyone ever done WW? Have any tips? Please share!

Edited because...I'm computer illiterate, and for some reason my picture did not post. Sorry!

June Claire is stable today. I have an amazing story to share about that, actually. Last night Michael called the NICU about 9 pm to check on her. He was told that she had brought her sat (saturation) levels up and things were looking really good for the night. Well, a couple of hours later I got an e-mail from my friend, Sabrina -- I've known her since we started Kindergarten together 20 years ago. She was telling me that she stood in for June for prayer at their church, that her mama felt led for her to do it and that it was a really good prayer time and she just wanted to let me know about it. I mentioned to her that it was funny she said that because we had just gotten good news about June's breathing (something we've been struggling with) and she e-mailed back saying they had prayed around 7 or 8 pm. Right before Michael called, right when the levels started coming up! Praise the Lord! I'm telling you, I was raised with praying folks and I have seen miracles happen before (and I mean MIRACLES -- my aunt being healed of cancer one of them!) but it has never happened to me or my immediate family before, until now -- and it is the best blessing EVER! I get chill bumps every time I think about it.

She is still fighting, she's such a warrior. They attempted a fifth spinal tap last night and were unsuccessful, so they are going to try again today. If they don't get anything this time, I think we are going to refuse any more -- at least for a while. They have to go up on her oxygen every time, close to being at 100%, and that is just not good for a tiny baby who is already struggling with breathing. I think she needs a rest. But that is just my mama instinct, so we are going to pray about it and talk it over with the doctors before we make any final decisions.

I have a few post planned for this week that are non medical related -- I need the break from medical terms for a while. I will still keep you updated on JC, but there will be some other post coming, too.

Hope

I just wanted to quickly update and let you all know that June Claire has the flu. She's now fighting the flu, an eye infection, and a UTI all at the same time -- which is horrible for a two pound baby. She is stable right now, but has really got a hard fight ahead of her. Please keep her in your thoughts and remember her in prayer.

PS -- my mama's milk must be doing its job, because she gained two whole ounces since yesterday (putting her at 2 pounds 9 ounces). And this is AFTER her feeds have been cut in half for two days.

BTW -- they began increasing her feeds again today by 2mL every 9 hours. At 9 pm tonight she was at 14 mL every 3 hours. Her full feed was 20 mL before she got sick.

Three weeks old!

June Claire is THREE weeks old today! I can't hardly believe it. We are so thankful each and every day to wake up and have her in our lives. Here is June's three week update:

-- Today was not a good day. Sad way to celebrate your three week birthday. :( JC had an incredibly rough morning where she was not stable at all, having episode after episode of desats and just having a very hard time breathing. I think I told ya'll that they had taken her off the nasal cannula and put her back on the nasal CPAP. Well, this morning she was having such a struggle that they intubated her again with the breathing tube. Bless her poor little heart. I was so shocked to go in this afternoon and see the breathing tube -- for some reason, they didn't bother to let us know how rough of a time she was having, so it was a huge shock for me to just walk in and see it. I will definitely be speaking to the doctor about that -- I mean, if she is doing so poorly, we would like to know so that we can rush over; even if that means sitting in the waiting room. Today she had a new nurse (I don't know WHY they keep taking Carrie away from us -- she's supposed to be the primary nurse and she's our absolute favorite. *sad face*) But thank the Lord, since she's been back on the breathing tube she seems to be settling down. I was there eariler, before supper, and she was moving around and pressing her little foot on my finger as if to say, "Mama! Get me out of here!" ;)

-- Her CBC (complete blood count) was elevated today and they strongly suspect an infection. This would answer the question of why she's having such a hard time breathing suddenly. They took several cultures and have sent them off to the lab. We should know within 48 hours what the reports are. Depending on what type of infection it is (the ones mentioned to us were just the common cold and then the dreaded one -- pneumonia) they may do a spinal tap so as to further tell how long she will need antibiotics for. This would be her third spinal tap. In three weeks. I'm so glad she won't remember any of this! :(

-- She will likely be receiving a fourth blood transfusion before the weekend is over.

-- She weighs 2 pounds, 5 ounces as of today! Almost back at her birth weight -- you go JC! She was at 20 mL's per feed, but the doctor halved that and put her back on IV nutrition, so as to allow her body to rest and try to beat this infection that she has.

I THINK that's all I have so far for you. I can't believe my sweet girl is three weeks old already. I have a lot of mixed emotions going on about this -- but that'll be another post for a rainy day. :)

My mama, cousin and his wife are on their way down tonight. They'll be staying until Sunday. It is so nice to see a familiar face and have someone you know to talk to. It'll also give us a small break as grandparents are allowed to go sit with babies without the parents having to be there. Michael usually goes over once in the day and then around midnight for a while (he's a night owl) and I try my best to get over there about 8 in the morning (some mornings it doesn't work as Sara wakes up, and I try to let Michael sleep since he takes the night shift), but I definitely go for a few hours in the middle of the day after the doctors rounds end at 12. I would sit over there 24/7 if I could, but that's not fair to myself, Sara OR Michael. June, either, because she needs her time to rest without someone staring her down and reminding her she needs to fight every time the machines beep...I mean, gazing adoringly at her. ;)

By the way, before I go I wanted to say that pumping is going really, really well. I can NOT make myself pump 10-12 times a day. I always get at least 5, but usually 7. I'm getting 20-24 ounces per day consistently and I have a really nice stash going on in the hospital freezer. They say June has so much milk it takes up a whole SHELF, and most babies just have a bucket. What can I say....I'm a milk-making-machine! :)

The Birth Story

A friend asked me the other day if I was going to share June's birth story, and I realized I had never even though of that! It seems like there was no time for rejoicing in her birth since it was so difficult. Anyway, I had some extra time tonight and decided to share. WARNING -- TMI!

Michael, Sara, and I had left Smiths Station, AL (near Columbus, GA or Auburn, AL -- we're stationed at Fort Benning, GA) on 4/17 to vacation in Orlando, FL with my mother-in-law, Kelly. I had my 24 week appointment about a week and a half before we left, and my midwife said everything was fine and gave me the OK to go -- even though I had mentioned to her several times that I thought I might be losing my mucous plug and that I seemed to be having a large amount of discharge. She didn't see any reason for concern and didn't even check me (how I love Army physicians).

Fast forward to the 20th. We had a great day, saw my MIL off to her flight, then spent the afternoon in the lazy river at the hotel. Went for supper at Planet Hollywood in downtown Disney, and on the walk back to the car I mentioned to Michael that I was going to be walking slowly because I felt really sore. Not painful at all, just sore. We drove back to the hotel and watched the fireworks at 9 pm. I probably got in bed a little before 10. We were planning to leave out about 8 am on the 21st, and Michael says he just felt like he should get all of our bags packed up and put together by the door so we wouldn't have to worry about them in the morning. He came to bed about 12:30.

I woke up about 1:15 with cramps. I seriously thought I had gas, so I ran a hot bath and got in to soak for a while. The pains were very consistent but labor had not even crossed my mind -- so I didn't time them or anything. I got out of the bath, drank some water, walked around, sat down, even took another bath....and NOTHING made the pains stop. I started to get worried at this point. I had sent my mom a text about 1:45 (I think) that said something along the lines of, "Hey, I'm having pretty regular pains, if they don't stop I'm going to the local hospital" and she just replied back to rest and hopefully they would ease off. At 3 I had had enough and was getting scared. I decided to call the hospital, but wanted to pee first. When I went to wipe (I told ya'll this was going to be TMI!) I got blood. I FREAKED out. I've always heard blood comes near the end. I called the OB floor at Martin Army Community Hospital (where I was being seen back home) and the nurse who answered the phone told me, after I explained what was going on, that it was likely gas and I should just rest. I said, "Are you SURE? Can you please ask the OB? I'm bleeding!" to which the OB said for me to go as quickly as possible to the local hospital. At this point it was about 3:15, so I woke up Michael (I'd been trying to let him sleep for as long as possible) and said, "I'm having regular pains (still couldn't make myself say I was having contractions) and the OB clinic said for me to go to the hospital NOW." Just before this I had timed the contractions and they were 30 seconds long and about 60 seconds apart. As soon as I realized how fast they really were coming, I got very nervous. I went in the kitchen and threw up in the sink (lovely parting gift, right?) as Michael was getting Sara up and us ready to go out the door. We stopped by the front desk to get directions to the hospital, then about 4:00 we were out the door.

And the car ride. I'm pretty sure I was hitting transition in the car. I have never felt such intense pain. I could not even open my eyes for fear the baby would slide right on out. I'm pretty sure I broke several laws -- no seatbelt, on my knees crouching backwards in the seat -- at one point I thought I might even bust the window out I was hitting it so hard to get through a contraction!

By 4:30 we had arrived at Florida Hospital at Celebrations and was on the OB floor. I walked into the ER entrance and said..."If this isn't labor, I don't want to feel the real thing. I'm about to push this baby out NOW." She immediately called for someone to take me up to OB. A very nice man came around the corner and offered a wheelchair, to which I promptly snapped "NO! I need to walk!" Unfortunately, he forced me to sit down after taking 4 steps and nearly falling over during a contraction. In a very firm (but kind) voice I was told he was just an orderly and had no desire to deliver a baby in front of the elevator. I sat down and was whisked upstairs to the triage room. At this point I was shaking and my teeth were chattering because I was alternately hot and cold, and I really felt I was about to push her out and I was straining so hard not to do it. They wanted me to pee in a cup so I went to the bathroom, then as I was coming out I coughed and I was like, "OMG, no. I just peed myself." The nurse wasn't in there to hear me...but apparently my water had broken. I just didn't know it.

They got me into a room and informed me the doctor was on his way. He was there in 3 minutes (great person, great doctor -- definitely recommend Dr. Mark Palazzolo if you're in the Orlando/Kissimmee area) and he checked me. This was about 4:45. I was 6 cm.

From this point everything gets a little hazy. I was given a shot to stop labor and a shot of steroids. OUCH to both, let me just tell you. I was being hooked up too all sorts of monitors. They had trouble finding JC's heartbeat. I was given a second shot to stop contractions, and a second shot of steroids. Then I was checked again about 5:00. 7 cm. I remember being asked if I felt a gush of fluid at any point, and I realized that when I thought I peed myself....it really wasn't pee. Once they found out my water had broken everything kicked into high gear. There was no putting off labor. Dr. Palazzolo made the decision too call the NICU team from Florida Hosiptal at Orlando (30-45 minutes away) because they were not equipped to handle a 27 week old baby.

When we were told the NICU team was on their way, it hit me: we were having a 13-week premature daughter in a few minutes. We were 9 hours away from home. My husband was at my side and my 2 year old daughter was asleep on the chair. I looked in my husbands eyes for the first time since I was put in the room and I could feel the fear in his eyes. I tried not to start crying and I asked him to call my mama.

Then I started feeling some intense pressure. I asked to be checked and I was at a 9. This was about 5:15 or so. I had to push so bad but I knew I couldn't because we needed to wait for the NICU team. I asked for an epidural because I knew from previous experience that sometimes it stalled labor, and at the very least it would take the edge off the intense need to push, which hopefully would mean I could hold back until the team arrived. I felt like the biggest failure ever getting an epidural -- I did NOT want it, but I felt like it was the right decision to make faced with our circumstances. The epidural was placed around 5:30-5:40.

About 5:50, they started having trouble with June's stats. It continued for a while and before long, they lost her heartbeat completely and could not find it. I remember the doctor screaming for an OR, screaming "Where is the NICU team?", and telling me I needed to push NOW if I wanted my baby to live. Well, what more inspiration could you get?! One push and June was born at 6:05 am on April 21, 2010. Literally, as the doctor grabbed a hold of her, the team walked in the door. God's timing is perfect!

And I heard nothing. I think that will haunt me forever. June had little heartbeat and was not breathing at all. Of course, that meant no cry. I looked at Michael as if to ask if she was alive. I couldn't bring myself to say the words. We just looked at each other in the eyes for a moment and then he bowed his head to pray. I was teary, but I think I held it together pretty well. I had such a sense of peace.

And now June will be three weeks old in a couple of days. I have a variety of mixed emotions that tend to change with each passing hour, more on that later. But there you are -- the story of the birth of my sweet, feisty June Claire. :)

Too blessed to be stressed

The past few days have made me really stressed. Being in this tiny room doesn't help at all, either. That's not to say I'm not thankful for the Ronald McDonald house and those who have helped make our stay here possible. Let's start with an update on June Claire:

-- They think the reason for her elevated white blood cell count is because she has an eye infection. They realized this a couple of days ago and started her on antibiotics for it.

-- She has a UTI, which they began antibiotics for today.

-- She had her breathing tube removed and is on a nasal CPAP (NCPAP). She struggled for a while last night with her oxygen saturation and was struggling with it a bit early this morning, as well. She switches back and forth between the NCPAP (the "second step" -- in laymans terms -- of the three "steps" of the ventilator) and the nasal cannula. They put the nasal cannula in when she needs a break from the NCPAP mask. She tolerates it for very short amounts of time (just long enough to give her little face a break from pressure), but not for extended time periods.

-- Her pressure is at 5 cm, down from 7 cm the other day and 6 cm yesterday. This is good. Her oxygen level is 28%, which is pretty dang good considering normal room air is 21%.

-- They repeated the head ultrasound on Wednesday and we got the results late Thursday night. This showed that her IVH has slightly increased in size. Not what we wanted to hear, but definitely not the WORST news ever. They will repeat the ultrasound next Wednesday, and depending on what it shows will determine the next step.

-- June is at her max feedings (19 cc's) for now. She is tolerating them really well. She just needs to gain a little more weight before they can increase them any further. She is fed every 3 hours through a feeding tube. She was 2 pounds 6 ounces a birth, 1 pound 15 ounces at one week, and 2 pounds 1 ounce at two weeks, and 2 pounds 3 ounces today (two weeks and three days).

-- And now for the cute news -- I was able to hold June skin-to-skin last night! She snuggled right up against my chest and slept the whole time. Oh, how I LOVED it. I can't even begin to express! So as the nurse was laying her back in the isolette, she laid her on her belly. Well, I guess miss little June Claire doesn't like to lay on her belly -- because she tucked her knees up under her, propped herself up and flipped over to her back! She was whining and grunting the whole time she did it, too, as if to say...."I mean to tell you I do NOT want to be laid on my stomach! Good grief!" I was stunned! I said, did she for real just turn herself over?! The nurse told me that wasn't the first time she's done it! And while she doesn't seem to mind the tubes being in her, she does not care for the wires to be laid on her. I watched her twist and turn and grunt and fidget until she knocked her feeding tube wire off of her chest last night. She does spitfire things like this so often that the nurses have all dubbed her "Miss Fiesty".

Now imagine that -- seeing a full term baby flip over is one (very adorable) thing -- but watching a barely-two-pound baby the size of the length of a Barbie doll do it? Totally another! I guess I just automatically assumed that since she was so early she wouldn't have her own personality, but BOY was I WRONG! And how ironic that I was just commenting to Michael early yesterday morning that the name "Sara" reminded me of a calm, peaceful personality -- and that's pretty much what Sara is. She's full of energy, but she's sweet and kind and snuggly. And then I said that "June" reminds me of someone spunky. Well, I guess I was right!

The news that really put me in a depressed mood was that a couple we had met here -- their daughter was born also at 27 weeks, 3 days after June -- their precious, sweet girl passed away at 7 PM last night. I did not see the mother, but I met the father last night as he was coming out of the hospital and I was going in and he told me the news. This daddy was absolutely tore up. He was shaking and crying and just looked horrible, as you can well imagine. In NO WAY do I mean to take away from their grief, but I had just spoke to the mother yesterday morning and she had said their baby girl was doing okay -- "stable but critical" which is what June's doctor and nurses tell us all the time. I am scared to death. You think they're doing okay but you never really know. Please keep this family in your thoughts and prayers. She was their first and they are about my age (25ish). I can't even imagine.

Now for the "too blessed" part. So after feeling very down and having the devil fight me over and over again for the past 2 or 3 days, we walk in and find a little purse filled with all kinds of goodies for me for Mother's Day (thank you, volunteers!) and a STACK of mail! So many wonderful, encouraging cards from our friends and family. It's like Christmas when we walk in the door and find cards waiting for us. Seriously, ya'll don't even realize. And the best part? Someone I don't even know purchased June's Angel from the embroidery company, prayed over it and sent it to us! We'll be putting it on her isolette. My baby has so many thoughts and prayers going on for her all over the country. I know I can name England, Japan, Turkey, and all over the US right off the top of my head. Prayer chains have been started for her all over. And *I* think *I'M* stressed? NO! I am so blessed -- WE are so blessed!

(Sorry for no pictures. I promise they will come in the next week!)

Anxious, but peaceful?

Today I'm feeling anxious and peaceful all at the same time. We will get the results of June's head ultrasound, thus letting us know if the IVH has grown or reduced in size. I'm anxious to know what it says, but peaceful because I know God has us in His arms right now. Such a sweet feeling!

I posted a picture of the beach because every time I go there, I am sooo happy, calm, I feel like I'm at home. If Heaven is anything like a beach, it's going to be wonderful! :) We're actually going to the beach Sunday, for Mother's Day. Sara loves the beach as much as I do, and I know it will be nice for her to get out of the house.

13 days

For a mama, the one thing getting you through a painful labor and pushing is the thought that you will hear your baby cry and be able to hold them, love them, cherish them, as soon as it's over. For mama's of preemies and babies with complications, that isn't a reality. When Sara was born, she had breathing complications as well and didn't breathe for about the first 25 seconds of her life. I was EXPECTING to hear her cry, so those 25 seconds seemed like an absolute eternity. I was scared to death, but I didn't know the reality of the situation so I "knew" things would be okay.

At June's birth, I KNEW things might not be okay. I KNEW she wasn't going to breathe on her own. I fully expected that. So that icy silence that greets you as you push your tiny baby out was deafening. It was so loud, yet so steely quiet at the same time. And for the past 13 days, while we have been able to look into her eyes, hold her hand, snuggle her once to me...we've still had pure, heartbreaking silence.

Until today.

Today, my 13 day old daughter CRIED and I HEARD HER. I heard her weak, fragile cry. I asked the nurse (Carrie -- our favorite), "Is that June?!" And she said, "Mama, THAT is your baby." She opened the side of the isolette and lifted her up into my hands. As soon as my hands cradled her (this is the easiest way to hold her without having to move/tape tubes and cords) my sweet, precious girl calmed down. She stopped crying and snuggled right into my hands. I could not stop crying for what seemed like hours, literally. I think Carrie even cried a little.

Today, for the FIRST time, I am at peace with whatever may happen. I have a strong faith in God and I know whatever happens is His perfect will. And don't think I'm morbid when I say this -- but if the unthinkable were to happen....I have heard my daughter's voice. I am at peace. It is in God's hands.