Friday, December 10, 2010

so... yes AND no...

I don't really know how to write this post- I'm still a bit confused myself. We just returned from our video fluoroscopy- or swallow study at Children's Hospital. On our first study, they tried thin liquids first, saw she was aspirating and went directly to honey-thick liquid (formula, breast milk thickened to the thickness of honey using Simply Thick). Gemma didn't aspirate the honey thick liquids so we were placed on a regimen of feeding her thickened liquids for all feeds- either with Simply Thick or with rice cereal in formula.

Today, we started the study with Nectar thick liquids for Gemma. This is one level thinner than the honey thick. They were trying to minimize radiation and since she didn't aspirate the honey thick last time, they didn't need to see it this time. They wanted to check her thinner liquids but I told them she was a gulper so they worked with a thicker liquid first. This is where the yes and no comes in...

1. No, she did NOT pass her swallow study.

2. No, she did NOT aspirate... that's good.

3. Yes, she shows potential to aspirate... that's bad.

4. Yes, she will most likely grow out of this by 1 year (if she doesn't have any other developmental issues- which we don't see any delays in development at this point.)

5. Yes, it could absolutely have to do with her reflux.

6. No, they don't know why she's aspirating or showing potential to aspirate.


The bottom line is: she has a slow swallow. Her swallow and anatomy are just fine however when she swallows, she lets all liquids get to the top of her airway and then "lazily" closes it off with the epiglottis. Most people are quicker about this reflex and she needs to be too in order to pass her swallow study. She didn't aspirate any of her liquids but they did kind of pool right at the top of her airway- the speech clinician said that if she got tired or lazy while eating, she could definitely aspirate. Not a guarantee but a distinct possibility. So, as of right now, nothing has changed in their recommendations for her feeding schedule.

She is currently getting preventative inhaled steroids through her nebulizer that we may or may not continue on our pediatrician's recommendation. We will for sure continue on her reflux meds and were advised to try to switch formulas to Gentle Ease by Similac (I think). Supposedly, this can also help with her reflux.

We also asked about her contact with people and the Speech Clinician thought that it was just fine to be reasonable about her health. For example, we can have visitors who are healthy (and have healthy families), and preferably have had a flu shot, at any time. Also, if we want to take her out to church or to a "public place" the real risk comes from us touching things and then touching her or someone coughing or sneezing on her. So, if I cover her up and bring hand sanitizer with me (and use it before I touch her), I should be able to take her out in public. All that being said, that's what ANYONE should do for ANY new baby during flu and RSV season. That's common knowledge- if you or someone you live with are sick, don't be around a baby. I don't know how much of an increased risk she's at anymore since we are keeping her from aspirating her food. She still could be aspirating her saliva which could irritate her airways and make her more prone to a more serious respiratory response to germs. We just don't know. She doesn't show signs of aspirating her saliva- I don't think she does, anyway. But since we can't know for sure, I'm thinking our pediatrician will continue with our same course of treatment- nebbing, keeping her away from obvious germs etc.

So, yes and no. No, she didn't aspirate her food at all. Yes, she's still getting really close to aspirating it with each swallow... So what does that mean? I guess we continue on with the same course of action until March or April when we'll go in for another swallow study. Hopefully, by 6 months, she'll be fully developed out of this. So, yes- what we are doing is helping her. No, we are not done yet. Yes, God is faithful- No, we do not doubt His ability or willingness to heal her. Yes, we will keep thickening her feeds and watching to make sure she's not aspirating her food. That's all we can do. We'll continue to treat her reflux by elevating her, medicating her, switching her formula, and thickening her food. That's all we can do right now and that's our "normal". Bottom line... Gemma's healthy, she's perfect, she's beautiful! What more could we ask for!?

The Lord is faithful and present. He hears our prayers. He is near to us in our times of fear and our times of joy. He is more than we could ever hope for and everything that we need. We will continue to rejoice for all the glorious blessings we've received in our beautiful daughter Gemma. She truly is the most precious of all jewels.

Philippians 4:4-7
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Monday, November 29, 2010

Baking with Mama

Gemma and I made cookies today- well, I made cookies and talked her through the process. She was very inquisitive in her bouncy seat, wondering what craziness her mama was involved in. I'm certain that she won't remember it, which is good, since I am not a big baker so she won't come to expect this of me! :)






This photo makes Gemma look like she's been eating the cookies which she has NOT been doing... that's just Prevacid drool on her face. Her mama should really wipe that off- sheesh.

Sunday, November 28, 2010

musings on motherhood... a post about pumping.

I am finally starting to feel a bit more like my old self- my pre-Gemma self. When I had Gemma, I had a CRAZY hormonal trip for a good two weeks. I was miserable. I was anxious and crying at the drop of a hat, I felt out of control of my emotions, and totally helpless to make decisions about what was best for my daughter. All this was hitting me while we were in and out of hospitals, clinics, specialists etc seeking answers as to why Gemma wasn't nursing. All of a sudden, I had a baby who had special feeding needs and concerns and I had to wrap my anxious, hormonal, crazy self around managing her needs. I swear Abe looked at me like I had grown another head every time I freaked out.

Once I got all the thickening stuff under control, I felt better. Gemma was gaining weight and I was spending all my time taking care of her or pumping. (Sorry if this is too much information- I'm just being honest.) So, pumping occupied a TON of time especially when each feeding takes almost an hour and she has to be held upright for another 30-45 minutes post feeding, and then I would have to pump. Also, Abe was at work so I was all by myself all day trying to manage that schedule and the dogs! Phew! Then to top it all off, pumping made me feel AWFUL. I don't know if anyone else has had this experience but whenever I pumped, I felt horrifically nauseous and depressed. It absolutely made me feel like someone I loved just died. It was bad. I began to dread it and when the doctor told me that all I had to do was what would keep me sane and happy, I decided to taper back on pumping.

So, about that... unfortunately, I'm done pumping today. I was really hoping that I could breastfeed Gemma eventually- the speech clinician at Children's thought this might be a possibility. Unfortunately, I have not been pumping enough to make that a reality. It makes me really sad, actually. NOT sad enough, however, to feel nauseous, moody and awful 8-10 times a day. I have enough breast milk saved to give Gemma supplemental bottles for another two weeks so she's getting antibodies from me for a bit longer. She's doing wonderfully well on formula so I should feel good about that transition but... I still grieve the loss of the breast feeding experience.

A lot of people give their very kind opinion that breast feeding is the ONLY way to go and that if you don't breast feed, you are not a good mom. They would never say that in those exact words but the phrase, "it'll get better, keep trying," or "it was never that difficult for me, you must just be doing it wrong" and "you know, breastfeeding is the best for baby and I know you want to do what's best for your baby." I get it. Breast milk is best for babies but for me, it's NOT an option. My daughter choked when I tried to feed her. She got red in the face, struggled to breathe, looked terrified and choked. So, No. I could NOT breast feed my girl. Now unfortunately, pumping has not made it a possibility ever. I tried, I did. But I am not going to feel awful about making the choice to be the best mom I can.

Since I decided to cut back on pumping, I've felt so much better. I have more time to spend with Gemma and I'm not feeling awful while I pump. After a few weeks of cutting back, I'm all done now. So all this to say... and I'm certain that my mother and grandmothers would be mortified at a post about gasp! pumping!... I'm making this choice for us, me and my daughter. The choice to be happy and have more time in my daily schedule has helped me enjoy this holiday season a bit more like I used to. The time leading up to Christmas is my favorite time of year... and I'm starting to feel a bit more like myself.

I think pumping is really not the big point of this post, but more an example of motherhood. The decision to stop pumping has been torturous to my heart. I have never battled guilt or shame like I have contemplating quitting breastfeeding. Ultimately, I have to overcome that guilt and shame, because neither of those emotions are how God wants me to mother Gemma. I'll choose to do what's best for us, and as I get back to being myself- happy, spontaneous, freakishly excited about Christmas etc., I become a better mama to my precious Gem.

I am still not 100% there- I think it has to do a lot with lack of sleep and lack of time for Abe and I to spend time together. But it also has to do with this whole new phase of life. I feel like I'm living with one part of my heart on the outside of my body- Gemma is like a part of my heart, my soul. She's so precious to me, it's unexplainable. Because of how important she is, I am that much more vulnerable to hurt. When she's hurt, it's like I feel physical pain. So, this is what motherhood is all about. It's learning to live life with a part of your heart wandering around outside your body; it's being vulnerable beyond belief because you have no control. It's terrifying and exhilarating, sobering and silly, painful and joyful, mundane and breathtaking... do all mothers feel this way?

Friday, November 26, 2010

7 weeks

Here she is... seven weeks old. I'm so thankful for her! We celebrated Thanksgiving yesterday and I realized I hadn't taken any pictures of her lately. So, here she is in all her pink glory... I thought the hat was a hoot!








Monday, November 22, 2010

heavy

Today I have a heavy heart. If you've read my blog for a while, you know I had a miscarriage a little over a year ago. I was so saddened and grieved the loss of Abe and my first baby deeply. When I became pregnant with Gemma, I was overjoyed but acutely aware of the unpredictable gift of a healthy pregnancy. Today I am acutely reminded again of the marvelous gift of my healthy beautiful daughter as those around me are bathed in grief.

This won't be a long post but please lift up some of my friends in prayer. I have a friend who just delivered her little boy 19 weeks early. He lived for an hour with his parents and then went home to Jesus. Another friend just found out her little baby has a fatal genetic disease. She is just starting her 2nd trimester. Lastly, a dear friend is faced with worry as her daughter is experiencing complications in utero. I still am praying for friends who have been struggling to conceive for years- praying that their empty wombs are filled with life even now.

How humbling, how heartbreaking. Hold your kids tighter than you did yesterday- nothing is guaranteed and I know that there are many women out there who would gladly trade places with you for a midnight worry session or feeding over a beautiful little baby.



Lord, please remind me constantly to be immensely grateful for Gemma- for every cry, for every late night, for every giggle, for every messy diaper, for every gas pain, for every nebulizer treatment, and puke covered pajamas. She is more than I deserve and for You to entrust me with her is staggering.

God you are good, please reveal your mercy, love, and grace to those whose hearts need you now more than ever. Lord, the ones you love are heartbroken... You know what to do- You are King of the Universe, Lover of my soul, Prince of peace, and the great Healer. Draw near to Your children and bind their broken hearts.

Friday, November 19, 2010

Surrender



I am almost one month away from going back to work and I can't imagine leaving Gemma. I know moms say that all the time and that the hardest time for them is dropping their baby off at daycare when they go back to work. I am anticipating a lot of tears on my part as I drive away from her.

Although I will be sad spending the day away from her, she will be in such good hands. My mom has graciously offered to watch her full time until the summer. My mom is such a good grandma. She just dotes on Gemma and it's really wonderful and touching to see her love love love my little girl. I have been so stressed out about finding a daycare that I feel good about, that is close by, and affordable. With the extra concern about Gemma's risk for respiratory infection, I was even more concerned about her being around other kids and germs. I had an amazing friend lined up to take care of Gemma 3 days a week but she lives really far away from me. I was so willing to drive to know that my girl would be in good hands but I am absolutely overjoyed to be able to drop her at my mom's (about 10 minutes away). My dad is retiring sometime in the near future so they should be able to have some good quality time with her. What a gift for her to really be loved by them and known by them from such a young age.

In other news, we are vaccinating Gemma for some of the crud she could get this season. I had a really big knot in my stomach about vaccinating her. There is a lot of information out there on why kids should or should not be vaccinated and it's hard to know what choice to make. I have a lot of friends in the medical field and they are usually horrified at the possibility of not vaccinating kids. My brother, a physician, said that once you see a child die of whooping cough, you'll never argue against vaccination again. How horrible- I can't imagine. There really is no option for us due to Gemma's lung/aspiration issues and my being surrounded by germy kids all day every day. With RSV season winding up and flu and whooping cough starting to make the rounds, we just can't risk it. I did some independent research through the Children's Hospital of Philadelphia. I talked to our pediatrician and my friend who is a nurse practitioner and picked their brains about the safety of vaccines. Both of them encouraged me to protect her as much as I can- there are even some additional vaccines that she may qualify for due to her lungs being "compromised". So, I will be praying for the absence of any side effects to any of the vaccinations she will receive.

That brings me to the title of this post. Surrender. If God has been teaching me anything through my beautiful little girl, it's surrender. Most of you who know me would probably say I'm pretty high strung. I guess I thought I wasn't that much of a control freak but I have seen myself become more and more stressed out about things that are out of my control. This has been especially obvious to me during my pregnancy and Gemma's first 6 weeks of life. I can't fix her feeding issues- I can't make her stop aspirating. I can't prevent her from refluxing. I can't possibly be next to her every second of every day to make sure she doesn't choke on her own reflux- and it's really hard for me to let go!

I read a great book by Angie Smith called I WILL CARRY YOU about the sacred dance of grief and joy. She lost a beautiful little baby Audrey Caroline, started a widely read blog, and unearthed a whole new understanding of God. I highly recommend it. It's beautifully written and so authentic. God is using her in mighty ways in honor of her daughter Audrey. Like Heather said about Briana, it's not a ministry she would have chosen but it's one God has called her to and a way she can celebrate her daughter. One of the things that really spoke to me from this book is how to communicate with God when we so desperately want something. She paralleled her story with that of Lazarus. When his sisters sent word to Jesus hoping for healing, they simply told him that the one he loved is sick. Jesus knew this and more already, as evidenced by his telling the disciples that Lazarus was dead. The sisters never told him this, he was already aware of the situation. What deeply moved me was the idea that the sisters didn't ask that he heal Lazarus, or make him well, or name specific things that were going wrong that they wanted Jesus to address. They simply told Jesus that the one he loves is sick and left the details up to Him. They simply went to him with their concern and believed Him to be big enough to know what to do. It was a message that communicated their belief in who Jesus is and their faith in His power. Sometimes, in my need to control things, I just have to communicate my concern to God, and believe that He is big enough to take it from there. Is it possible, that's what God wants us to do with everything? Surrender?

Every night I place my hands on Gemma's softly rising and falling chest and beseech God to be with her when I sleep. What a struggle to offer my child up to God and simply say, "Lord, the beautiful, precious, little girl, You love, is sick." and leave it at that. I have to qualify it usually by saying, "and I'm not going to tell you how to do Your job... You know what she needs and I surrender her to You." :) I say this multiple times, to convince myself to let go. I could stay up 24 hours a day and watch her to make sure she doesn't choke but I would not be able to parent her in the way that God wants me to parent her if I neglected sleep and my health. I would be ill, mentally and physically, if I chose to be that controlling. I know she needs a healthy mama to be a healthy girl. I know I can't completely protect her- I know I can't "save" her- I know I can't be everywhere all the time. But my God can. and is. All the time, He is with her. When I close my eyes to sleep, He is with her. When I hear her cough, gag, or stir- no matter how fast I get there, He is always with her. I know that surrender implies the outcome could be painful. But that is what true surrender is. NO matter the outcome, surrender is letting go of the reigns. That's why it is so HARD!

When I finish praying over her, I slowly leave the room, crawl into bed and turn on the monitor. I can see her picture in the video monitor we have but I turn the picture down to sleep (it's like a giant search light in our bedroom). Sometimes, I pray over her through that monitor, surrendering her again, beseeching my Savior to give me peace as I turn her over to Him. This has been the hardest thing I have ever had to do- not dealing with her health, not making decisions about which direction to go for treatment options- no, the hardest thing I do every day is leaving her side to sleep. I know it's possible that she will throw up her last feeding and could choke on it- I do everything in my power to help her digest it before she goes down for the night but ultimately, I have to leave the room- I have to sleep- I have to hand her over to the King of all Kings.

If He is who He says He is, which I believe to be true, He is more than able to care for my little girl. Surrender means knowing that He is God and I am not. Surrender means knowing that I can't do everything. Surrender means knowing that my girl could choke even on His watch. Surrender means turning off the video screen of the monitor and closing my eyes. Surrender means knowing and acting on the belief that God is in control no matter the outcome, no matter the situation. If I believed that everything would be fine or Gemma will always be perfectly safe because I am a Christian, then surrender would be easy. But that's not truth, Jesus says in the book of John, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." (John 16:33) Whatever pain I endure or fear I struggle with does not change who God is. He is mighty and powerful, all-consuming, and the the ultimate Prince of Peace.

Being a mom has made me feel different about God. Knowing how I love Gemma, how I feel about her and tying that directly to how God feels about all people- and me personally, is so humbling. To be the recipient of that depth of love is staggering. It's also made me look at my parents differently- to know that at one time my tiny little heart was in their hands and they cherished me as much as I cherish Gemma. And even though I'm all grown up now, being loved by my parents or being loved by my Father doesn't change. The love doesn't go away or lessen; that fire in your soul for your kids is permanent. God designed it that way- for us to see in each other a poor man's representation of true love. And I don't know about you, but this divinely inspired "poor man's representation" or human version of marital love, parental love, brotherly love, is unbelievably intense and wonderful. How much more magnificent is the love of God? God lit a match in my heart the day Gemma was born, a match that lit a candle, that lit a bonfire, that lit a wildfire that is uncontrollable, and unquenchable.

One of the songs that I sang a lot while I was pregnant and play now for Gemma is How He Loves- on this blog, performed by David Crowder Band. Here are the lyrics.

He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.

And oh, how He loves us so,
Oh how He loves us,
How He loves us all

Yeah, He loves us,
Oh! how He loves us

Oh! how He loves us,
Oh! how He loves.


We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If His grace is an ocean, we're all sinking.
And Heaven meets earth like an unforeseen kiss,
And my heart turns violently inside of my chest,
I don't have time to maintain these regrets,
When I think about, the way

He loves us,
Oh! how He loves us

Oh! how He loves us,
Oh! how He loves.



It's so true... how He loves us- hurricane force, tender as a kiss, unchanging mercy. I'm unbelievably grateful to be on this journey of surrender with a God who loves me more than I can fathom- more than my bursting heart loves my precious girl, more than I could ever possibly love Him back. What grace, what mercy, Oh, what love!

How great is the love the Father has lavished on us, that we should be called children of God! 1 John 3:1

Saturday, November 13, 2010

Wednesday, November 10, 2010

Happy 5 Week Birthday, Beautiful!







No words needed... enjoy!

Tuesday, November 9, 2010

Gemma

Today is the day before my girl turns 5 weeks. She celebrated her one month birthday by being baptized at church. It was beautiful. We had intended on having a big celebration with our family and friends and a luncheon but due to her health risks, it was quick, quiet and perfect. The baptism happened during the church service and she was so quiet and slept through most of it. After the service, members of our church family and our "family" family gathered around her to ask God for her healing. Because she is at an elevated risk for respiratory infection/illness, they didn't lay hands on her but they did gather around her with their arms outstretched as I cradled my little girl in my arms. It was so amazing to feel the love and the peace extended through their arms. God has His hand on all of this. As our pastor so eloquently said, "even though our hands are not on Gemma, God's hands are." Thank you for your prayers and support. Thank you for loving our girl and respecting our requests to keep her free of germs. Thank you for checking in on us through this blog. We are doing well and soaking up our time with Gemma before I go back to work and life gets really busy.

Today, she is napping in her bassinet in the living room with me and I'm going to go pick her up and cuddle her because I can't stand letting her sleep there and not in my arms any longer. I love to feel her breath on my neck, her tiny hands patting my skin, and her little body smushed up on my chest. Heaven.


Right before I go get her...

Friday, November 5, 2010

Eye Contact

Just yesterday, Gemma started making eye contact with us. She follows our voices and looks for us and then when she sees us, she locks in and gazes. Before yesterday, she would turn towards our voices but her eyes would be all over the place. She still has a short attention span for focusing on us but it's amazing to see her look right at me. Abe loves it too- he says her name and she cranes her neck to find him. It's so sweet.

So, while she was awake this morning, I had to take a few pictures. She even looked at the camera! I'm just over the moon for this little girl. She is lulled to sleep by my voice so I read out loud and she dozes off. She would much rather be held while she naps than placed in her crib or bassinet. She hasn't really noticed the dogs yet but they notice her. The constantly want to sniff her and be right up next to her. Violet especially, seems to take interest in her. When we are doing tummy time, Violet lays on her tummy on the floor with her nose about 3 inches away from Gemma's face and just watches her. It's quite sweet actually.

Right now, Gemma is in a baby bjorn, snoozing. She will sleep here for hours if I let her... or if my back would hold up...


Here are her 1 month stats!
Weight 9 lbs 2 oz
Length 21 3/4 inches
Head 14 inches

She's in the 50th percentile for her weight and head and for her height. She's just perfect! Then again, I already knew that. :)

Enjoy!



Wednesday, November 3, 2010

4 weeks ago...

Abe and I received the greatest gift imaginable...



4 weeks ago, today.

Monday, November 1, 2010

Pretty in Pink

Just because she's so cute...

Sunday, October 31, 2010

Saturday, October 30, 2010

A night out


Last night Abe took me to an amazing steakhouse for a birthday dinner. My sister babysat Gemma and had a great time. Anna, my sister, is a nurse so I knew Gemma was in good hands. Before we left, I wanted just one family picture so here we are- just missing he dogs. We'll get one with them for Christmas! It was wonderful to cuddle in a cozy booth with Abe and remember why we decided to be together in the first place. We toasted our couplehood first and our parenthood second. We ate rare steak and sipped red wine and just basked in each other's presence. I love that man something fierce! Then, on the way home, in true romantic fashion, we stopped at the store for diapers and wipes... ahhh what a night!

Friday, October 29, 2010

Irresistible






I couldn't resist snapping a few photos of my girl this morning. She's dressed all pretty in purple and just looked so peaceful sleeping that I had to capture it.
Happy Friday!
Enjoy!

Thursday, October 28, 2010

A bed wedge, a Danny Sling, and one sad Mama...



Today we got a delivery of a bed wedge to elevate one side of Gemma's crib mattress, a Danny Sling to prevent her from rolling down to the end of the crib, and now she's taking a nap all by herself in her crib.

So where does the sad Mama come in? Well, since she's so refluxy, and aspirates thin liquids, our doctor recommended that Gemma sleep inclined and in a Danny Sling. So, now she has to sleep in her crib at night. I've gotten used to her sleeping in her bassinet right next to me. I could just sit up and stare at her if I needed to see her. I could scoop her up if she was crying and cuddle her on my chest if she was having a hard time going to sleep. Now, I have to sleep in a separate room and it's breaking my heart. My little girl, so small, in that big crib... I may have to spend a few nights in the leather recliner in her room just to ease myself into this transition. I'm sure she'll be fine, but me? Not so much.

If I'm this worked up over her using her own bed in the nursery that I envisioned her sleeping in for months, what on earth am I going to be like when she has her first tooth, gets on the bus to Kindergarten, graduates High School, gets married, has her own baby!? Oh my aching heart... it's all too much. Thank God, she's got a long way to go before I'm zipping her up in her wedding gown or watching her get on the school bus. God knew what He was doing when He started us out as babies.

I'm loving her right now- cuddling with her, feeding her, talking to her, kissing her little cheeks. She is the best birthday present I've ever gotten! And I've gotten some good ones... a house, a dog...

Abe and I are going out for my birthday tomorrow night just the two of us. I'm so excited. We are going for delicious steak and wine dinner. I have missed my one on one time with him. I know that we are parents now but we were a couple first and he's the love of my life- I am dying to reconnect with him. We are both looking forward to spending a little time together that is not punctuated with spit up, crying Gemma, barking dogs, or dishes piled in the sink.

Life is good, God is good. We are so hopeful that God will heal Gemma completely and she'll be on her way to normal foods/liquids soon. She's worth every odd medical thing- bed wedges and slings, and every late night feeding. I'm re-evaluating my life right now, realizing that pleasing others is not what is the most important calling in my life. The People Pleaser in me is fighting that, but is freed by that statement at the same time. My priority is raising my daughter, loving my husband, and honoring God. All else can wait- dirty dishes included.


The two most important people in the world.

Wednesday, October 27, 2010

Happy 3 Week Birthday Gemma!





Today is Gemma's 3 week birthday. She's already changed so much and is doing really well. Her reflux meds seem to be making a difference and nebbing her is getting much easier. Here are some photos of her as she looks today at 3 weeks old!

Wow, I can't believe that she was IN my stomach 3 weeks ago. That's just bizarre! God really works in miraculous ways to go from giving birth just a short time ago and now to raising a little human!

Wow, she is SO LOVED.


Here she is with her two new best friends.


Tuesday, October 26, 2010

Tiny Turtle


This is just a glimpse of our nighttime routine. I can't resist how cute her little nebulizer is. The little turtle face just cracks me up. If we can give her this while she's sleeping, that's ideal. If she wakes up, she usually cries because she's hungry and that breaks my heart! The reflux meds seem to be making a bit of a difference- in fact, she slept for almost 5 hours straight last night after cluster feeding. It was wonderful and we are both feeling better today than yesterday.

I published her birth story but since I started it a long time ago, it posted before all the other posts. If you are interested in reading that, it's dated October 9th. Enjoy!

I continue to thicken everything and we are getting some more medical equipment delivered- a bed wedge and a danny sling to help her sleep more upright and keep the reflux in her tummy, where it belongs. She's precious and such a trooper- this is what she's doing right now...



Oh, sigh....

Wednesday, October 20, 2010

Update #2- house arrest

Isaiah 40:31 (New International Version)

31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

This will be a quick one- Gemma is asleep, temporarily, in her bouncy seat next to me. We've come up with a new plan with our pediatrician and the clinicians we've seen at Children's. I will continue thickening all her feeds, whether breast milk in a bottle or formula with rice cereal. I am going to taper off pumping. I have like zero time during the day to pump as it is since her feedings take so long so I'm going to only pump as I can and give her at least one bottle a day of breast milk. Every little bit helps.

Our doctor is trying to get our insurance company to approve Prevacid for Gemma as a reflux med. Since standard of care says we need to use Zantac first(which is a thin liquid that she can aspirate) we have a bunch of hoops to jump through to get Prevacid approved. Also, the doctor wants to put Gemma on Pulmocort (an inhaled steroid) to keep her airway calm and clear through flu season. The primary concern is any little bug can cause major infection since she already has fluid in her lungs and an irritated airway.

So, we are on house arrest. Sorry to those of you who want to come and visit- we have been told to limit her contact with people outside Abe and I. Also, anyone who even has a shadow of a cold has to steer clear completely. That means my plans of taking my girl Christmas shopping with me are definitely off the table for now. No church, no grocery shopping, no errands unless we are driving through. I'm bummed that I'm bound to the house, especially since the house is such a disaster, it stresses me out to look around. However, keeping Gemma healthy is my primary focus and we'll camp out here until she is healed.

Please join us in praying for complete healing of her airway, so there is no aspiration and complete healing of her reflux. Please pray she is healed by the next appointment we have in 6 weeks- if not way sooner! Please pray she has zero ZERO negative side affects from any of the meds we decide to put her on- especially the Pulmocort. I know God is able and this could be so much worse but it's hard seeing your baby in pain, gagging, unable to breathe or eat. Thankfully, we are able to get enough in to her that she is gaining weight- not as much as we would like but I'm working on it! As of right now, she sleeps on my chest inclined so that her reflux doesn't bother her so much. She sleeps pretty well, me on the other hand... not so much.

It's amazing how much I love this little girl and how overwhelmed I am. Pray for peace and patience for me- wisdom for Abe and I as we continue to navigate unknown situations- and guidance for all of our many doctors who continue to give Gemma wonderful care!

The Lord is faithful. This is the child we prayed for and I know He made her for Abe and I to parent. She is God's precious jewel and our beloved daughter. My heart swells to bursting when I look at her. When I have a spare moment, I promise I will take a picture or two.

Until then, picture her wrapped snugly and sleeping soundly... for now. Her tiny left hand is folded in her blanket and her right arm is sticking straight out. She is breathing smoothly, the tiny hairs on her head pulsing with her heartbeat in her soft spot. She's breathtaking...


...and I think she needs a diaper change. :)

Sunday, October 17, 2010

Update




Psalm 119:41 May your unfailing love come to me, O LORD,
your salvation according to your promise;


I have been meaning to update the blog before this but due to the insane week and a half we've had, I haven't had time. I have started to write Gemma's birth story but had to put that on hold.

First of all, we are all fine. Gemma continues to amaze us, enchant us, and challenge us. She's beautiful and we absolutely adore her. We've had a wild week and have been in and out of hospitals, clinics, and offices with our girl making sure she's okay.

When we were in the hospital, Gemma really never nursed. I saw multiple lactation specialists and no one could get us nursing. She would never latch and stay on. Because of this, or so we thought, she was super fussy and would nurse for hours on end without really getting any nutrition. Her pediatrician sent us home with directions to monitor her "output" so to speak and if she went 24 hours without a messy diaper or her urine continued to be concentrated, that we might have to supplement. I was in so much pain from nursing that I decided to pump for a day and feed her by bottle. She fed off the bottle fine but did some interesting gagging at the end of her feedings. She would stop breathing, turn red, white around her lips and gag. It didn't last long but long enough to startle me and her. I noticed that when she was 3 days old, she wasn't stooling like she should have so I called the pediatrician and asked how much to supplement with. We then started adding formula to her bottles of breast milk. She was instantly a different child. She was full! She slept, she pooped, she smiled. She still gagged occasionally but I thought that it was just a normal thing.

On Sunday, when Gemma was 4 days old, I had a home care nurse come visit to work with us on breast feeding. I didn't realize how important breastfeeding was to me until it wasn't working for us. Jayne, the nurse and lactation specialist, was wonderful. She worked with us for over an hour and thought that Gemma had a dysfunctional suck. She told me that this could be due to Gemma's little nose being squished during pregnancy/labor/delivery and to talk to our ped about it. So, I continued to pump and feed with the formula supplement.

On Monday, 5 days old, we went back to the pediatrician for her first appointment and she had gotten back up to her birth weight! This was amazing! Our pediatrician was still noticing the squished nose that Gemma had and thought we should get it checked out for a possible deviated septum so she called Midwest ENT and off we went for our first specialist appointment. At the ENT, they looked at her nose, telescoped it to make sure that all the bone growth was normal and gave us the all clear. The bones in her nose look normal and the cartilege at the tip will hopefully straighten out. (It's so minor, if it doesn't, it's barely noticeable anyway.) So, we ruled out that her nose had anything to do with the breast feeding issues.

Back to the pediatrician on Tuesday for a breast feeding consultation with the doctor. She watched me feed her and then watched her bottle feed. When I described some of the gagging stuff that I had seen with Gemma, the doctor thought she might have reflux. She also wanted to make sure that her swallow and suck were normal so she made appointments for us to get a swallow study and Upper GI done at Children's Hospital on Wednesday (one week old).

Off we went to that study- keep in mind, this whole time my hormones are OUT OF CONTROL. I cry at the drop of a hat, am so overwhelmed with all the pumping, feeding, watching her stooling patterns that I'm wound just about as tight as a top! So, we bottle feed her Barium at the swallow study and the Speech Clinician notices right away that Gemma is aspirating her liquids- she said mild to moderate. She adjusted the thickness of the Barium and the type of bottle nipple until Gemma was taking liquid just into her stomach. After that, we did the Upper GI study. I was praying the whole time that they would not have to put a feeding tube in her. I can't handle her being in pain. Immediately, they noticed she was refluxing (sending stomach contents and acid back into her esophagus- they said it was class 3 or grade 3 which means it reaches the back of her throat.) Because they saw this right away, they didn't need to do the feeding tube. Thank You God.

From there, the speech clinicians came up with a plan to thicken all of Gemma's liquids. I add something called Simply Thick to breastmilk bottles. I am supposed to add rice cereal to formula bottles if I use them but I can't get the ratio right yet. As of right now, breast feeding is off the table. Breast milk on it's own is too thin and because she has such a strong suck, she's taking too much in and aspirating it.

When I spoke to a speech person who is also a lactation specialist, she thinks that all this started because she aspirated my breast milk in the hospital. She said that babies are smart and Gemma must have made the connection that "whoa, that went down the wrong way, I'm not doing that again" and now she just quits whenever she's put to the breast. Tricia, that speech/lactation person, thinks that had we not found this early, Gemma would have stopped taking food from the bottle too. She also could be the kid who gets pneumonia or RSV due to the fluids already in her lungs.

I knew that having a newborn was a lot of work, I am under no illusions about that. But I expected difficult breastfeeding, late nights etc. not hospital visits, boxes of hospital grade food thickeners and multiple follow up appointments. Our pediatrician has been great and pointed out to me that I need to just enjoy Gemma. It's so hard to sit back and just soak her in when all I've been doing is dealing with her eating. I've set a plan for her feeding and will continue to pump and do 1/2 breast milk 1/2 formula bottles that are thickened for her feedings. I don't know how long I'll pump, it makes me pretty uncomfortable, nauseous and hormonal. I'm hoping that goes away. It's so important to give her the nutrients and immunity from my breast milk. Especially at this time of the year.

We've asked all our friends and family members to stay away if they have any illness (cold or otherwise) since it could be a much more serious complication for Gemma and people have been really respectful. I just want to be a hermit with her. I would be totally fine not seeing anyone until she's 6 months old. I love taking naps with her on my chest, watching her smile in her sleep and singing to her.

Once we get the reflux medicated, she should also feel much better. She's really uncomfortable at night and whenever she's awake. She constantly wants something dripping down her throat so she'd eat until she exploded, suck on anything, or just cry herself to exhaustion so she doesn't have to feel the reflux. Poor little honey.

Like I said at the beginning, we are all fine. She's healthy and will most likely grow out of the aspiration and the reflux. One clinician said that she had no doubt in her mind that she could get us breast feeding in 6 weeks. I will believe it when I see it since she aspirates and is in pain whenever I breast feed her now.

Thanks for all the congratulations and well wishes. We do LOVE LOVE LOVE her and can't imagine a more amazing gift than her presence in our family. It feels as though she's always been here and yet just arrived. I know that God has chosen Abe and I as Gemma's parents and I'm honored and overwhelmed to make decisions that will have her best at heart. I love being her mama.

I will post her birth story as soon as I can write it and if you'd like to see more pictures of her, please go to ciderpressstudios.blogspot.com and check out the newborn pictures the incredibly talented Julie Feldman did last weekend.

1 Samuel 1:27 I prayed for this child, and the LORD has granted me what I asked of him.

Saturday, October 9, 2010

Gemma's Birth Story


On our way to the hospital!

Here is the story of our little girl's arrival. Better late than never- pardon the choppy writing, I did a lot of this with a newborn in my arms. Typing one-handed is never ideal!

In my previous posts, I already updated that I had developed pregnancy induced hypertension. I was not experiencing pre-eclampsia nor eclampsia, but my doctor was concerned that if I stayed pregnant too much longer or was too active, I could easily develop these much more serious complications. I went in to the doctor and was put on bedrest for a week. When I went for my 39 week appointment, my doctor checked my blood pressure and made the decision to induce me. Since I have some other super minor medical issues having to do with my heart, I really wanted my doctor to deliver her. She set the induction up for Tuesday night. I would receive something called Cervidil on Tuesday night to "ripen my cervix" (gross) and then I would start pitocin up in the morning on Wednesday. My doctor said that I would deliver on Wednesday and she'd be on call so I would be sure to have her deliver me.

Abe and I got everything ready and headed to the hospital on Tuesday night at 7:00. I was admitted and given Cervidil at 8:50pm. That was NOT FUN. Quite painful for something that wasn't supposed to do much other than get me ready for Pitocin. I had been praying that the Cervidil would send me into labor and I wouldn't need Pitocin. I had heard horror stories about how intense the contractions can be with Pitocin and was scared. I was having contractions but not feeling them very strongly. The nurse, Mary, who was AWESOME and took such good care of me on her shift told me that it would for sure not happen that night but that we could call Abe back in if he went home. She noticed that some of the contractions were getting a bit painful and offered me a sleeping medication called Vistrol (I have not idea if I'm spelling that right). It's an antihistamine like Benadryl and just makes you tired. So, after discussing this with Abe, we decided that he should go home and sleep in our bed so he was well rested for the following day. We also decided that I would take the sleeping med and hopefully get some sleep for all the hard work coming my way the next day.

I took the Vistrol at 11:30pm and my contractions were getting more painful. They had not checked me in awhile and offered me some morphine to help with the pain while I waited to be far enough along to get an epidural if I chose. My new nurse, Cindy, said that if I was having break through pain by 12:30am or 1:00am, pain that was not allowing me to sleep, that I could get morphine and that would help. I barely made it to 12:30 before I asked for the morphine. I got the morphine at about 12:50 and waited for some sort of relief.

Much to my surprise, my water broke at 1:05am. Immediately, I asked if I should call my husband. Cindy said "no, let's check and see where you are and we'll go from there." She checked me, my contractions were getting really really painful, and I was at a 4. She removed the Cervidil. I was having terrible back labor and asked her when I could get the epidural. She said when I was at a 4 or a 5 would be an ideal time. I said, "Okay, I'd like the epidural now and can you tell the anesthesiologist to run?" She laughed and said she'd get things going as quickly as she could. She hustled to get my IV in and then Dr. Shiner would come in and do the epidural (I know that's not how he spells his last name but that's how it's pronounced). All the nurses said he was the best and I was so lucky to have him do my epidural. He came rolling in and I shouted, yes shouted, "Hallelujah!" I'm sure he gets that all the time. He quickly got the epidural in and I felt so much better. Since I was having bad back labor, Cindy put my leg up on a table to try to get Gemma to turn. By this point, I was at a 6- it was about 2:40 in the morning. Still I didn't call Abe- we still didn't think things would move that quickly. Then, at 4:00am, Cindy checked me again, after having me roll over and prop my other leg up to get Gemma to keep turning. I was at a 9+ and she said to call Abe. Thus far, I had been laboring all alone- or with Cindy. So, I called him. This was our conversation.

I had to call him twice, he didn't answer the first time.

"Hello?" Super sleepy voice.

"Hi honey, you need to come to the hospital now." Super sleepy voice.

"Oh, okay. I'll hop in the shower and be there in a little bit."

"No, no, no, no, no... I'm at a 9+ and I'm going to start pushing when I'm at a 10. You need to get here NOW. No shower."

"Oh, okay."

"Hurry, honey... I already have my epidural and everything."

"Okay."

"Okay, bye."

Abe got to the hospital at about 4:50am and Cindy had me "labor down". She said that I was at a 10 and since it was important for me to have my doctor deliver me, due to my hypertension and heart condition I should just let the contractions bring the baby down naturally without pushing.

I did that for about a half hour and started pushing at around 5:30. Apparently, I was a good pusher because she thought I'd push for about an hour and then Dr. Syal would be there to deliver Gemma. The on-call ob changed at 6:30 or 7:00am. So, I pushed and pushed and she moved down well.. too well. At about 7:00, Dr. Syal still wasn't there and I could feel that I HAD to push. The nurses called the ob residents and two young fresh faced residents came strolling in. One knew my brother from college and they proceeded to just chat with me. I was so tired that I thought I was going to pass out. I did between contractions- just feel asleep. The resident held Gemma inside me until Dr. Syal got there and the nurses just kept telling me to breathe through the contractions. I kept apologizing, and saying, "I'm so sorry, I'm trying so hard not to push.. I'm so sorry." 30 minutes later, Dr. Syal came rushing in, threw her purse and coat on the floor and jumped into her scrubs. She asked if I'd like a mirror, to which I responded in no uncertain terms "NO!!" She told me I'd need a bit of an episiotomy and did that and two pushes later, Gemma was born. Dr. Syal let the resident deliver her and the nurses handed her right to me.

She was screaming, all mushed up- I'm sure from being held in a tight spot for at least a half hour, and all puffy. I expected this cosmic, all-consuming love to hit me right away but it didn't. I felt like I was having an out-of-body experience- she was a stranger, and mine and totally helpless and I couldn't connect right away. I was expecting Abe and I to burst in to tears simultaneously and neither one of us did. I cry every time a baby is born on tv, what was going on?!

We spent a few minutes just holding her and then I let them weigh her. Everyone thought I'd have an 8 or 8.5lb baby and she was way too small for that. I knew that she wasn't that big- sure enough, 7lbs 4oz and 19" long. Her head was 13.5" and she was perfect. She had these long thin fingers and long thing feet. Her little nose was mushed and bent and she had this beautiful little red mouth. Abe gave her a bath when my mom and dad got there. I tried to have my mom take pictures but she couldn't figure out my camera so I asked her to give it to me. There I was, taking pictures from my hospital bed of my husband bathing our daughter about an hour and a half after I had given birth. The nurses just laughed at me.





After that, we didn't have any visitors that day except my sister and brother-in-law who were going out of town the next day. I was so tired I thought I was going to die. I hadn't slept the night before we went to the hospital and thought I'd get a good night's sleep on the Cervidil (Wrong.) so I had been up for over 48 hours. I was delirious. The next couple of days passed in a blur. Abe stayed overnight with me the first night and then went home the next night. Gemma never really nursed. She would latch, unlatch, cry, arch, gag, and then do it all again. I met with every lactation specialist in the hospital and none of us could get her nursing. The other posts have more info about what happened after that.

We went home on October 8th and I was still feeling like she was a stranger- I knew that I loved her but it was still a very foreign concept to me. I couldn't believe I was a mom. I was still waiting for that magical moment of connection with her.

The next morning, I got up with her to change her and as I placed her on her changing table, it happened. I was absolutely flooded. Overcome. Invaded by the sweet presence of my little girl. I looked at her, tears pouring down my cheeks and fell in love. There it was. That cosmic, unexplainable, magical, divine, all-consuming connection between mama and daughter just hit me. I looked at her and said, "Hey my beautiful girl, do you know how much your mama loves you? So much, precious Gemma, there are no words- I love you, I love you, I love you."

I'm so thankful that my labor and delivery was quick and smooth. That's what I had prayed for. I prayed for a fast and uncomplicated labor and delivery, an easy recovery and a healthy baby and mama. God has been so faithful. Her health is an ever-changing condition but right now she's healthy. We are doing everything in our power to keep people away from her and protect her little lungs. What a gift she is!


On our way home!

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