Tuesday, December 17, 2013

6 Weeks - brief update

I began my blog basically as a journal for myself and to share with family members and it fluctuates in the frequency of how often I post. Last month with all that happened with Grace I had the time and enjoyed daily updates. Lately, my time to write is minimal and I do miss it. There are so many things I do not want to forget. It seems baby Grace is changing each day and it will be a blink of an eye and she will be a toddler and on it goes. Kind of a sad thought at times but that is how life is.

The question everyone asks is if Grace is gaining weight and yes, she is. A friend loaned me her baby scale and we have been doing weekly weight checks which is so nice to do from the comfort of home. At 5 weeks she was 8# 8 oz. (about the size of many of mine at birth) and at 6 weeks she is 9# 8 oz. although this time with a onesie and diaper on. I hear comments that she looks so little but you know, babies are little and I adore that. It is so hard to remember seeing how fast they grow that it can seem our other children were never as small.

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As for sleep and eating it varies from day to day. She basically is eating every 3 hours and in that time period also has a time of sleep. Her awake times are increasing, especially in the morning and we enjoy seeing her bright eyes. At night it also varies. One night she gave us 5 hours of sleep so that John checked on her to make sure all was well. We also would do much better if I didn't fall asleep so often when feeding her. Oh the feeling of waking an hour later with a baby still in your arms wondering just exactly if you actually did feed her.

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I am having photographic fun with Grace. I love taking pictures of newborns and while I have had quite a few babies, my skills and camera quality have improved with time. I have so many ideas floating around in my head and I wish I had time to try them all. It is true that a newborn in the first couple of weeks is easiest to photograph as lately, Miss Grace isn't quite as cooperative. She is adorable even with her scrunched up crying face.

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I am working on her birth announcement to include with thank you notes, which I had hoped would be done already. With Zippy I had his ready before he was born and all I needed to add was the picture and print. Of course, we were thrown a curve ball this time. Here is one of my favorite ideas with lights for a backdrop which I will try again with her Christmas dress. Such fun!

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Wednesday, December 4, 2013

Our GEM is 1 month

Grace, you are 1 month old! Strange to say it as to me it feels like you are only two weeks old, the same amount of time that you have been home. My due date for you was on Dec. 3rd, just yesterday.

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I looked back at when Zippy was your age and I notice a few differences, although I also see that you look very similar to him. First of all, you haven't really gained much from your birth weight. Of course, that is kind of hard to do when you weren't fed for the first 8 days of your life and then only gradually. I need to take you in for a weight check to find out for sure. Nowadays you are a hungry little girl and have definitely gotten the hang of this whole eating process and are certainly impatient when you are hungry. You eat about every 3 hours, except during the night from time to time you like to mix things up and wake every two.

You aren't the best at sleeping yet, especially during the night, but if you are like the rest of your siblings you'll catch onto that. In the meantime your Mommy and Daddy are exhausted but that's a small price to pay for the delight that you are to us. It seems as soon as you are no longer in someone's arms you give it 5 minutes and wake up. And you aren't lacking in arms that want to hold and rock you. Here you are in Opa's arms.

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You like best to be held upright kind of curled up in a ball. And Daddy is the best at this hold and calming you down when you scream. He always has had that magic touch and I am so thankful for that, especially in the middle of the night. We wonder if you are going to be colicky like two of your brothers were but so far your screaming doesn't go on for too long.

We have found that when you cry, even for a few minutes you get worn out quickly. This seems to be a lingering effect from your pulmonary hypertension. I am again amazed at how far you have come Gracie as you look as if you'd never been sick. I was reading an article about Dr. Konduri, who worked with you at Children's hospital and when talking about his research said, "Watching a baby who has recovered from a life threatening illness rest comfortably on a parent's shoulder before going home makes all the effort worthwhile." And I realize again how sick you really were.

You are my only single baby to wear newborn clothes this long but they fit you perfectly and 0-3 is still a bit long and loose. You also still fit in newborn diapers. Which makes me wonder why it is that they don't seem to sell newborn diapers in a large box as they do other sizes. You do not like to have your diaper changed and scream each time. Your siblings don't understand what the big deal is.

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You are starting to be more alert and looking around at your surroundings. And just last night you focused in on Daddy's face when he was talking to you. I love when the eyes register a bit of recognition.

I am starting to hear cooing sounds from you and your head is quite strong as you lift it off my shoulder to look around.

You are so beautiful Gracie and everyone we meet comments on what a beautiful baby you are. Our Thanksgiving this year with you was even more meaningful for us.

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Psalm 126:3
The LORD has done great things for us,
and we are filled with joy.

Tuesday, November 26, 2013

39 Weeks

Today I would have been 39 weeks pregnant with a scheduled c-section for 8 a.m. How strange the turn of events to totally change that plan. So much for a calm and "relaxed" delivery. John and I were talking yesterday and it seems that I have almost totally missed the month of November. I remember shopping on the 31st of October getting ready for a birthday party for Missy and Seppy the next day. Little did I know what lay ahead and the month sped by while we watched and waited for our miracle baby to come home.

Our precious "GEM" has been home a week today and we are all adjusting well to having her home. The kids go on as if nothing is out of the ordinary. They are loving all of the meals so many generous people have brought for us. In fact they dread the day when I am cooking again, simply because that means it is back to sandwiches for lunch rather than all of the yummy leftovers. Zippy hasn't really struggled with a new baby most likely due in part to the fact that it means he has his parents home and a routine again. He still fights taking a nap and going to sleep at night but is screaming much less. And he loves "Bay (baby) Grace"

I am more worn out and sore and it feels like I am going in reverse with the healing process but then I suppose I am getting less sleep and carrying a baby around now rather than sitting around in a hospital.

John is back in the swing of things at work and went back to his basketball mornings and tae-kwon-do evenings with the kids. He was hobbling around here the past day or so being sore from lack of movement the past weeks.

Grace has long tiny fingers.

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Gracie is never at a loss for arms to hold and cuddle her and so when put down she often wakes. She is eating good although I am having to wake her at times during the day to make sure she does otherwise I find her waking every two hours at night. But when she is ready to eat there is no mistaking it and she becomes very impatient and loud.

My Grandma was able to enjoy Grace. She couldn't believe someone so tiny could have all of those tubes and such attached to her. And she was even a big baby for the NICU.

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I took Grace to our family doctor for a follow-up visit after two days home. It was unlike any well-baby checks as I felt I didn't really know my baby. The nurse would ask questions and I had to say that I didn't know the answer and had only been told by others that yes, she followed noises with her eyes, etc. It hit me again that it was the nurses in the NICU who knew her and I had been on the outside looking in. But yet so thankful for those caring nurses who loved and cared for our girl.

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I am so thankful that in no time at all I know my Gracie. She is such a gift and as I wake in the night with her I try to forget my weariness and thank the Lord who has given me the privilege of cradling a sweet babe in my arms each night. Oh the joy! Simply nothing else like it.

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So Blessed!

Wednesday, November 20, 2013

Life Goes On

I am going to go back to nicknames for my children. Look at my sidebar if you want to see who I am talking about.

Last night I was reminded of exactly what having a new baby entails. Over the past two weeks I thought I was tired out and I was in a sense but honestly I got so much rest during that time and it was a good and needed thing. Being my 8th baby I thought I would have remembered the exhausted feeling the minute you wake in the morning. Although, Grace was wonderful and kept to her every 3 hours, I just wasn't used to it. The nice thing about pregnancy is that in the final months you end up waking in the night numerous times and it kind of prepares you for getting up with a baby. My time of rest threw that off.

Today has been interesting. It is the first day all of us have been home an entire day. A day to try and get back into a routine, especially for Zippy. He has been without a nap way too many days and today when I had George put him down (I can't lift him for 6 weeks) he screamed. I was patient in the beginning and tried to work him through it but it ended up he was disobeying and it was a seemingly endless battle. I had to take a break and was crying in frustration but remembered a verse I kept reciting to myself while in the hospital with Grace. This may be a small in comparison to our trial with Grace but I still need to bring my burdens to the Lord, the only place my help will come from. He is my refuge and strength. Zippy did eventually exhaust himself to sleep.

Here he is happy wanting to be swaddled like "Baby Grace"

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Grace is catching on to breastfeeding much better today. She had gotten used to the bottle and would wait for the milk to pour into her mouth. She does choke with the amount of milk but I am used to that as a few of my babies have done the same so I have to keep taking her off and restarting. When it happens I hear the alarms go off in my mind as at the hospital when she did that it registered as her stopping breathing and a couple nurses would come running to check what happened. Today, it was just the two of us and blissfully no alarms.

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The kids are all enamored with their little sister. So far they have been good about taking turns holding her. Each time Gracie is in her bed I find Tank sitting next to her. He told me that he doesn't want her to feel alone and if she opens her eyes at all he comforts her. So sweet! (I need to get a picture of that).

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John is back to work as normal and was very busy today. I am finding how much I miss him. We had kind of a continuous date going down to Milwaukee almost every day together. We needed that too. Granted, I wouldn't choose that way to have times alone together but none-the-less, it was good.

And life moves on.

Tuesday, November 19, 2013


Oh give thanks to the Lord, call upon His name; 
Make known His deeds among the peoples.
Sing to Him, sing praises to Him; Speak of all His wonders.
Glory in His holy name; Let the heart of those who seek the Lord be glad.
Seek the Lord and His strength; Seek His face continually.
Remember His wonders which He has done.
Psalm 105:1-5

Our little Grace is HOME! 

John and I went down to Milwaukee for the last time today. We thought it would be a long discharge process as we had witnessed two in the NICU that took a full day. We arrived to nurses congratulating us and telling us all of the wonderful things about Gracie. They all took turns holding and smelling her today. And our favorite nurse, Tia was there for us again. That is another great thing about Children's hospital. If you like a nurse you can request to have them as often as possible and that was the case with Tia. John liked her from the first day when she put him and my Dad at ease. And she became a friend to me during my days there also. I am so thankful for the wonderful nurses who cared so much for our Grace and helped me get to know my daughter. Tia said she took more time to cuddle with Grace today before she left.

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They had all of the paperwork done and ready to go. Other nurses we had stopped in to wish us well all amazed at how far Grace has come in this short time. It was very emotional for me. I had a hard time not crying at every little thing. It is such a bittersweet feeling. So happy to be going home but yet there are things about the hospital that I will miss but more so some of the people I have met that I most likely will never see again. My Dad said the same thing.

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It will be an interesting rest of the week getting used to Grace. It is so different for me bringing a baby home this way. Sadly, I don't know her as well as the nurses do. I found out yesterday and it was reiterated to me today but when Gracie is hungry she is all out mad right away and lets you know it.

Please pray for all of us as we adjust to a new baby, a new routine, and just being back together at home.

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It has been a roller coaster 18 days. Thank You to so many of you who have been following our story and have been continuing to lift up our sweet baby and us to the Lord. He has carried us through. My Mom said not finding a new blog post in the morning is going to be kind of dull. I can't promise a new post every day but I definitely will keep posting updates when I can.

Thankful to be HOME!

Monday, November 18, 2013

Birthday Gift?

Today John turned 40, a fact he is not overly thrilled with. I keep telling him we just had a baby and his children seem to be keeping him young. We had hoped that today would be the day that Gracie came home. But being the first day after the weekend ended up not. So we took all of the kids down for another visit. We watched movies, ate pizza, went back and forth to the family kitchen for snacks, and got a little tired out of being cooped up.
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For those of you who wonder, I get some interesting questions, the clothes she has been wearing is from the hospital. I could have brought my own in but then I'd have to make sure it was labeled, that I got it back, and I'd have more laundry. I decided to let them dress her. They have a storage area of clothes that have been donated that they use. I can always tell when Tia is our nurse because she has her dressed cute and swaddled when we arrive.

We were able to meet the Attending Physician in the PNUC, Dr. Susan Cohen. Dr. Scott Welak who took care of Grace when she arrived had been the attending the past two weeks and filled her in on all of the details. Dr. Cohen was so pleased and amazed with Grace's progress. She specializes in the neurological field and was very familiar with the cooling process that Grace initially went through to heal her brain and heart. She was so happy to see that the MRI and EEG came back with good results without need of follow up. That isn't always the case with these circumstances. She explained that Grace came through this because of good genes, herself, and then she kind of choked on her words, "It is really a blessing". We know she came through this so amazingly only by God's grace. As her nurse today said, "She is a miracle baby." Yes, indeed she is.

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I had forgotten that in the beginning they would take blood gases from Grace which showed that she had been without oxygen for a period of time which is why they started with the cooling process, something they do for people who almost drown. Because of that, along the way she may have some areas of development where she is behind such as fine motor skills, or hearing. Although, Dr. Cohen said Grace being part of a large family is beneficial to her development as her siblings push her to keep up. But then we may not see any problems and this will be a small blip in time. The nurse also noted that most babies who were as sick as Grace struggle with feedings, and especially learning to breastfeed. Grace has been a trooper. The only thing she struggles with now is patience as my milk does not come as quickly as from a bottle. I am finding our girl actually does cry and quite well.
Grace has been taking all of her feedings without a problem and Dr. Cohen said, "Let's do this, let's get her out of here". Stay tuned....

Sunday, November 17, 2013

All Together

Oh give thanks to the Lord, for he is good; for his steadfast love endures forever!
1 Chronicles 16:34

We have had a great day all together as a family in Grace's room. We brought snacks which was nice not having to go to the deli or cafeteria for a change. The kids each took turns holding Grace and I am surprised I ever got turn.

Do you notice anything different about our little girl's sweet face?

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We were pleasantly surprised to find that Grace had pulled her NG tube out last night and they kept it out! She also took all of her bottles through the night. I talked to her night nurse, Amy, who was the one who facilitated me holding Grace for the first time and she said that "Grace is a rockstar and should be out of here soon."

The details of Grace's feedings may not be all that interesting but are the main reason she is still here. The doctors have put her on "ad lib" which means she eats when she wakes as long as it isn't longer than 4 hours. The nurses still try for every 3 hours but she doesn't have a required amount to eat. Right before we arrived she took in 70cc and later I was able to nurse her and she took 58 cc. Now they just take note of how much she eats or for how long she nurses.

Gracie is getting liquid vitamins and that wakes her up as it is a nasty taste. She disliked it so much she didn't want to swallow and kept gargling with it and swishing around in her mouth so that it drooled out. The rest of the time she smelled like a vitamin. That girl needs a bath!

It looks like we are nearing an end. Here is Grace with each of her brothers. I love it!

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Saturday, November 16, 2013

A Mathematical Equation

I was a bit frustrated this morning. I am worn out from traveling to Milwaukee each day to sit in Grace's area with her and just want to be home as a family. I am so thankful for a husband who reminds me to be grateful for how far we have come and not dwell on the hang-up of waiting on Grace's feeding to reach a consistent percentage. As one of the nurses told us everything is about numbers and mathematical equations to the doctors.

We talked to the doctor this morning because to us it seems Grace should be home. The doctor explained that she needs to be taking in 80% by bottle/breast and then she can move to "ad lib" which means eating when she wants to eat rather than scheduled. They are also watching to make sure she is gaining weight. Today she is at 7# 1.2 oz which is her birth weight.

The biggest thing for Grace is she wants to sleep. And she often doesn't wake well to eat. Again, she made a bit of progress in taking 51 cc from a bottle this morning and when I fed her at 2 pm she ate 62 cc. That is above her goal! But she is not consistent and when trying to feed her at 5 pm she took 1/2 hour to barely wake up and then she ate only 24 cc again so back to gavage feeding. It didn't help that she had been wide awake for an hour after the first feeding.

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Rotation of the attending doctor was today so we no longer have Dr. Konduri. The new doctor pushed to get us moved as John explained how hard this is coming down every day and shuffling our children around from place to place and not being able to bring them. So we were able to move Grace up to the Progressive Care unit this afternoon. We were thrilled!

Grace was in the A Pod which contains 6 small rooms that close off with a curtain. John said it was more private than at St. Joseph's though. The nurses sit in the small hall outside of each room.

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What two weeks ago and even last week was a NICU room filled with equipment is now empty.

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And what a difference! We have our own large room with sleeper sofa, TV, a window, and a door! In the NICU there is not much privacy as all you have is a curtain to hide behind when needed. Otherwise you hear many beeps and alarms and conversations going on. And you learn about all the babies there. Today we learned more about the tiny babe across from Grace and it was so hard to hear his Mama break down and cry and I was crying right along with her. It is a hard place to be. It is also a great place to be as it was rated the #1 NICU in the country.

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There are 9 babies on this floor and it is more relaxed and you actually kind of have your baby to yourself. John and I left tonight with a feeling of relief. Tomorrow we look forward to having the kids be able to visit with their sister all together!

Friday, November 15, 2013

Two Weeks

Count it all joy, my brothers, when you meet trials of various kinds,
 for you know that the testing of your faith produces steadfastness. 
And let steadfastness have its full effect, 
that you may be perfect and complete, lacking in nothing.
James 1:2-4

I wondered today exactly what I could write about. We are so quickly to the point where the changes are small but I know so many are reading each day checking on our little Gracie and today she is 2 weeks old already!

Wearing mittens so she doesn't pull out her ng tube.

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As it turned out with all that happened yesterday Grace was not moved to the step-down unit. John and I were disappointed as we had hoped to bring all of the kids to enjoy their sister on Saturday. The NICU is not conducive at all to a family and understandably so. We'll see if we ever get moved.

Many babies are discharged right from the NICU and as we have witnessed it can take an entire day for the whole discharge process. We still have not had any hint of going home. They keep talking as if we'll be there awhile as we are scheduled for a CPR class on Tuesday. {sigh} We are trying not to get our hopes up but when we see Grace acting much like a normal baby it is at times hard to understand the need to stay. Granted, we want her at her healthiest so that all is well when she does come home and we would have no worries of needing to go back. But we are always reminded that she is not a "normal" baby.

Today Grace took in the most she ever did from me at 40 cc. After nursing for a whole 20 minutes and staying awake too we hoped she would reach the goal of 60 cc. and given a little more time I wonder if she would have. But she gets closer to that goal each day. Nursing Grace is such a joy and definitely helps me bond with her. At times it feels like we are just borrowing her from the hospital.

Grace's bilirubin level went up from 11.7 to 13 but not high enough to need any treatment.

Grandpa got to hold her today.

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John had talked to the nurse about Grace's EEG and it was the same as before -- no seizure activity. We have found that the better Grace gets the less the doctors visit, which is fine with us. In the beginning we always had doctors stopping in for one thing or another.

Two more babies have been admitted to the pod Grace is in. One today was directly across from us. It is hard for me to see babies come in. I always think of Grace when I watched her be whisked away in an isolate not knowing what would happen. A flurry of activity abounds both in preparation but especially once the baby arrives. Doctors all discussing the patient. Respiratory therapists ventilating the baby. X-rays being taken. Nurses assisting. They closed our curtain and then all we see are feet and we listen and wonder. And it brings me back to seeing Grace for the first time. That was a hard day. I was so out of it and dazed at all that had transpired. Was that really just 2 weeks ago?

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Some people have asked how I am feeling physically and I feel good. I typically don't take pain meds long and haven't needed anything at all this week. I am sore but not in pain. The most pain I had was from the excess gas pressure in my mid-section from the surgery which then radiated into my shoulder. The doctor said it could have been caused by the blood that they may not have been able to get cleaned out when I ruptured.  But that pain ended this week. I am walking like normal and keeping up with my fast walking husband. He said I've kicked it into 2nd gear. But with this pregnancy I had gained more weight than I had with any others besides the twins so loosing so much so fast is wonderful. I almost feel I am walking on air.

 I am sleeping great obviously because I am not waking with a baby. I try to wake to pump at least once but I think I am in for a rude awakening when Grace does come home. The only problem with feeling good is that I probably do much more than I am supposed to. I forget that I am still healing internally.

John and I were able to go down early today so we actually were able to all enjoy a meal that was provided around our table as a family and then relaxed with a movie night. Time together we desperately needed. It's been two weeks. Praying it isn't three. 

Thursday, November 14, 2013

Never a Dull Moment

What an exciting day we had. John came home at noon and we both had heard that there was a shooter at Children’s hospital and that the hospital was on lock-down. We headed down to Milwaukee hoping it would be resolved by the time we arrived. In hearing more on the news and that a baby was involved I called Grace’s nurse to find out what was happening. Tia assured me they were all fine and that she had Baby Grace in her arms when it all happened. And if they had to evacuate she was taking Grace with her. The nurses and any parents were locked into their pods with the babies and even had to be escorted to go to the bathroom. Being a bit claustrophobic I was thankful I wasn't there. The thought of being locked in somewhere makes me shudder.

As it turns out the father of one of the babies in the Progressive Care NICU came to visit his baby and so he had clearance as those areas are locked. The hospital got a call that he might have a gun on him and there was a warrant for his arrest. The police came and he put his baby down and was compliant but as soon as he was out of the PNICU he tried to escape and the police took him down. Thankfully no one in the hospital was hurt. Read full story HERE.

When we arrived the hospital was still on lock-down with news cameras and police everywhere. We managed to get to the parking garage and by the time we walked through to the hospital entrance lock-down had just ended and there was a sea of people waiting to get in and out. Some Moms crying because their child was locked inside and they couldn't get there.

And it is another amazing work of God because Grace was supposed to be moved to that step-down unit today and the baby in this ordeal was one that was being discharged so Grace could move up. Dr. Scott came down later to tell us it was a little crazy there today and hopefully tomorrow he can get her moved. He remarked, “Maybe it was a good thing she wasn't up there today”. Yes, yes that is true. And he reassured us that it is safe.

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Grace had a busy morning having both an MRI and an EEG. Tia noted that she slept through the MRI and slept through putting the electrodes on her head and for the hour long test. But taking them off was a different story and she cried through it. We got the results for the MRI and her brain looks great, nothing abnormal at all! Yay! The doctor will give us the results of the EEG tomorrow.

She is still a little yellow so they are testing her bilirubin level again to see if it has increased. Right now she reminds us of Thomas as he had breastfeeding jaundice, which was caused by my milk and was our “yellow baby” for almost 3 months. And tonight Gracie really reminded me of Thomas in her expressions.

During the night she took in the most she has taken by bottle which was 35 cc. They increased the amount she should be taking to 60 cc. which is 2 oz. I was able to nurse her tonight and she took 20 cc. before falling asleep. We tried a few times waking her but she wanted nothing to do with that so it ended up being a gavage feeding. But each day she is staying awake longer to take in more. Such a slow process and it all depends on her. As Tia always tells me "She is acting her age. Late-term premature babies are consistently inconsistent" and you never know what they are going to do.

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We were encouraged though as the doctors went through their rounds. Dr. Khalil presented Grace and told her progress and how much milk she is taking in from bottle/nursing and gavage and one of the doctors exclaimed, "Wow!" My sentiments exactly.

God is so GOOD!

Wednesday, November 13, 2013

Thankful for Our Trial

This morning I woke up ever so thankful with a song in my heart from Psalm 121

I lift up my eyes to the mountains—where does my help come from?
 My help comes from the Lord, the Maker of heaven and earth.

 He will not let your foot slip—he who watches over you will not slumber;
 indeed, he who watches over Israel will neither slumber nor sleep.

The Lord watches over you—the Lord is your shade at your right hand;
 the sun will not harm you by day, nor the moon by night.

The Lord will keep you from all harm—he will watch over your life;
 the Lord will watch over your coming and going both now and forevermore.

Maker of heaven and earth! That is who is in control and is taking care of our sweet Grace. How awesome is that? I am filled with praise and gratitude for the ways I see God working. Not only in healing Grace but in how He is at work in my own heart.

John went to work the past few days but this afternoon he was happy to see Grace again and more alert than ever. He jumped right in with changing her diaper, swaddling her, talking to her, and cuddling with her. I love that man! 

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Our favorite nurse, Tia, was on duty which made it all the better. Tia was there when Grace was admitted to Children's and saw how bad she was and how far she has come. We also got to see Dr. Scott who was the doctor who worked on Grace when she arrived. He has been in the progressive care NICU and said she'd be the perfect candidate to move to that area since she is off oxygen and NO MORE PICC LINE! It is a step down unit and much more family friendly. If he can "pull some strings" he will try to get her moved later tomorrow. That way we could bring all of our kids and hang out in her own room.

One of the harder things about all of this is the shuffling around of our children. We have been blessed with a wonderful family and many friends who have jumped in to help in any way they can. This morning when I was home with the kids Simon had a melt down. This has been the hardest on him as up until almost two weeks ago I was always there for him. This morning was a screamy kind of day and he needed a lot of holding. I think he is ready to go back to a routine and so am I. Katie on the other hand thinks going to different houses and people coming over is so much fun and doesn't want it to end.

Grace now only has an NG tube which they put in last night and that allows her to suck better but still get the gavage (tube) feeding if needed. And of course the sensors that monitor her heart rate and pulse.

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We asked about the goal for feedings. Based upon her weight which today was 7# 3 oz. in order to go home she would need to take in 2 oz a feeding with 8 feedings in a day. At this point it is based on her hunger cues to an extent. The nurses document every little detail with each feeding from her muscle tone to if she took in a lot of air or fell asleep. Once she starts getting the hang of this it won't be as scheduled. But Tia gave me much more time to try feeding Gracie today. They weighed her before and after and she drank 24 cc which which is a little under one ounce but was good as she is figuring it out. John gavage fed her 34 cc more. She was hungry again before we left and I attempted to feed her but she ended up just cuddling up to sleep instead.

We have found Children's hospital to be such a wonderful hospital. Tonight they served a free dinner to families of patients. In the lobby they had tables set up with tablecloths and table settings. We were served a turkey dinner with all the fixings and had live dinner music. Quite nice and saved a bit of money too. We sat and talked with a lady who is staying with her severely autistic son who just had surgery. She said he hasn't talked since he was 3 years old. And it made us again thankful for the trial we have been given.

Then while we were cuddling with Grace we heard an alarm that we hadn't heard before. Tia told us we never want to hear that one. When we left, the doors to the pod across from ours were closed and I saw through the window a doctor in scrubs and masked working on a baby who came in yesterday. The parents and family were out in the waiting room. I had seen the mother Monday as she had just given birth and came to see her baby. And yet again so thankful for our trial.

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We are beginning to see the light at the end of this tunnel.

Tuesday, November 12, 2013

Little By Little

Today was a much better day! I thank you all for the encouraging comments both on my blog and on facebook and for praying. Knowing so many people are lifting up our family in prayer is such a comfort. At times these small steps seem to take so long especially when compared to the huge progress Grace was making last week. Patience is a quality that God is always trying to teach me.

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When I arrived to see Miss Grace this morning she was dressed in a cute pink onesie and little ruffle pants and looked so adorable. Her oxygen pressure had been decreased to 1.0 and the amount of oxygen was 21% which is the same amount we have in the air we breathe.

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I am starting to help out a bit more in the care of Grace and am able to change diapers, which is quite the task, trying to maneuver around the wires she still has. I don't know if I mentioned before but we are participating in a study on pulmonary hypertension and so they have been saving all of her diapers that contain meconium for further study. This may or may not interest you but I never realized that babies will continue to have that sticky, thick black meconium until they start taking in milk. So, instead of the normal few days for a newborn she has had that for over a week.

I was able to try nursing her again today but of course she was not awake enough to be interested. Initially it was frustrating seeing as today's nurse only gave me about 15 minutes to try. Grace did latch on, got comfortable, and drifted off to dreamland. So, they go right to tube feeding as she "used up her allotted amount of calories" in trying to nurse. The thing was, as soon as her belly began to fill up she began trying to latch on again. I'd love more time to work with her without the pressure of the schedule.

Shortly after, the nurse turned down the oxygen pressure even more to 0.5 and then right before her next feeding turned it completely off! Grace handled it well and so they were able to take off the nasal cannula. I was able to see my little girl's face for the first time (since the 15 minutes the day she was born) with only the one tube from her mouth covering it. Gracie is so beautiful and I love the feel of her silky tape-free cheeks.

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If Grace would struggle at all she will have the oxygen put back on but the rest of the time I was with her she was doing great. The picc line is still and she gets nutrients (lipids) through that but it is gradually being turned down.

Her next feeding I fed her a bottle. She went up to taking 45 cc today which is 1.5 oz. She has been only taking in 1/3 of that each time and then they finish up with the tube feeding but this time she was alert and looking around and took in 2/3 of that which means she took in 1 ounce. It sounds like a small amount but it was another accomplishment. Little by little we are getting there.

Pictures are deceiving and you can maybe tell here but she is much smaller than many of the pictures indicate. At her last weight check she was 7# 2oz. which is an ounce more than at birth. That surprised me but she had gained because of all of the fluids she was getting and is now coming down from that. Granted she is still a big baby in the NICU, just smaller than most of mine.

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Hurdles left to accomplish -- taking in enough milk while learning to nurse rather than bottle feed. And maintaining her oxygen levels on her own.

For you are great and do wondrous things;
you alone are God.
Teach me your way, O Lord,
that I may walk in your truth;
unite my heart to fear your name.
I give thanks to you, O Lord my God, with my whole heart,
and I will glorify your name forever.

Psalm 86:10-12

Monday, November 11, 2013

Emotional Ups and Downs

This week John is trying to get back to work at least in the mornings so today my Mom took me down to be with Grace and Katie came along. She really wanted to hold her sister. We found Gracie in a swing when we arrived. The nurse said she had been really fussy after her feeding and holding her wasn't helping and the swing was the only thing that soothed her.


Grace's nasal cannula is no longer the humidified high-flow. She still gets 2.0 of oxygen.

She was able to suck from a bottle and whatever milk she doesn't finish they tube feed. She gets 33 cc. which is a little over an ounce and they feed her every 3 hours.

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I talked to Dr. Konduri today for an update and he said obviously there is a huge change between today and a week ago and he is so happy with her progress. They finally got the results back from the EEG that Grace had last week Monday.

An EEG is a test of electrical activity of the brain. By looking at the EEG they can get some idea of how the brain is working. The EEG is most useful at telling if there is a tendency to have fits or seizures. EEG is short for electroencephalogram.

The results showed no signs of seizures which is good. It did show that her brain is a little behind what it should have been for 36 weeks gestational age (what she was last Monday). He is not too concerned being that she was a very sick baby and that could have a lot to do with the results. But they will schedule another EEG in the next week or two. If she has gone home already it will be as an outpatient. She will also have an MRI done before she leaves.

The main goals for Grace are to decrease her oxygen and get her eating normally without the tube and taking in more.

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I was able to attempt breastfeeding today which I was surprised at. I had been told that she would take to the bottle first to get her used to eating. Apparently since she was a late-term preemie but more that she wasn't eating for 8 days it may take her longer to catch onto this whole process. Thankfully she has proven she knows how to suck with the pacifier. I was able to get her to latch on twice and each time she sucked for about 2 minutes but then promptly fell asleep.

The hard thing about being in the hospital as the nurse explained is that they have scheduled feedings. It isn't as at home where I follow her cues. Here if she doesn't catch on I don't keep working on it but give her a break. I was able to give her some time but then we tried the bottle and she wasn't really thrilled about that either. Basically, she wasn't interested and was perfectly content to sit an look around. But, because of the "schedule" I ended up having to tube feed her and let gravity pull the milk into her belly. We aren't going anywhere at that rate.

But, I am so thankful that she did latch on as that is one step in the right direction.

When I got home I realized how much life moves on no matter if I am at this stand-still feeling stuck in time. John took the kids to 4H and here I am "resting". I probably don't rest as much as I should, I know. When we left the hospital I so much wanted to take my baby and leave. It is hard driving down and back each day. It is hard being with my baby for only 4 - 6 hours each day and having to hand her back to the nurse to cuddle and console. I know that right now she needs their care and I need to be patient and trust the Lord's timing on this. But please pray for me. I am really struggling tonight.

Sunday, November 10, 2013

Sigh of Relief

This morning we went to church as a family which seemed strange without our new baby in my arms. But it was oh so good to worship with fellow believers. There is nothing quite like the church body that rallies around to encourage and minister to your soul. If you read yesterday's post I talked about the lyrics from "Praise to the Lord the Almighty" and wouldn't you know that was the first hymn we sang today.

On our drive into town we were talking about last Sunday and how we weren't sure if Grace would make it through and how afraid we both felt. Praise The Lord He had a different plan and over this week we have repeatedly seen His love and care for us.

I had a checkup on Friday and Dr. Alice mentioned that the hard deliveries were continuing and that day she was going to deliver a 30 week old stillborn baby. Oh my! At that moment I realized how thankful I am that this is the trial that God has chosen for us to walk through. Dr. Alice said how ours has challenges as well but yet I told her that I was able to hold my baby this week and I am so grateful.

John called for an update this morning and thank you prayer warriors who were able to pray with us last night as they began feeding Grace during the night! And when John talked to the nurse she was getting ready for another feeding! Yay! Our little girl is getting her belly filled. The nurse said they had decided not to wait for her oxygen pressure to come down and then today they were able to lower it to 2.0. The next step is to move to a regular nasal cannula rather than the "high flow" one she is on.

We headed to Milwaukee today so encouraged and with Grace's brothers and sister very excited to meet her.

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My girls

Only 4 people can be in Grace's area at a time so we shuttled children back and forth from "the porch" (waiting room) repeatedly washing their hands for 2 min. Simon wasn't so sure why we were showing him this baby and he must have wondered what exactly this has to do with him but the rest of the kids were happy to hold her little fingers and feel her silky hair.

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And my Mom was able to hold Grace for the first time.

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John and I helped with the tube feeding of my milk and my sweet girl spit up on me. Funny the little things that mean so much at this time.

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We have also found that Grace does have quite the cry. When her vent was in and she was sedated I would hear other babies screaming and I wondered when that would be her. Well, tonight we could hear her screaming when we were down the hall, so I think we have arrived at that moment. Right before we left Gracie graduated to a "big girl bed" and they also dressed her! Looking forward to see what this week holds for us.

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We came home tonight sighing with relief at the difference in Grace from yesterday. We are yet again so thankful for more progress with every step closer to coming home.

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He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.”
Psalm 91:1-2
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