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.

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.

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.

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.

So Blessed!

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"

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.

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).

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.

Home

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.

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.

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.

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!

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.

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.

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....

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.

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.

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

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.

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!

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.

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.

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?

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. 

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.

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.

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!

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! 

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.

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.

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

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.

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.

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.

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.

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

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.

Changes:

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.

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.

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.

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.

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.

  

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

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.

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.

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.

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

thankful but a bit discouraged

This afternoon John and I both enjoyed taking turns holding Gracie. We were thrilled that her bilirubin had come down and we had her in our arms for about two hours until she decided to fill her diaper. That woke her up nicely with eyes wide open and she had a full-fledged cry, no longer hoarse from the tube. I wanted to get a short video clip on here that we took but you'll have to wait for that.

But now that she is breathing on her own and is no longer sedated she wants to eat. And does she ever go to town on her pacifier. The problem is, they don't want to give her food quite yet. She is getting nutrients through her picc line but that isn't filling her belly.

At this point her nasal cannula is giving her pressurized air with a little bit of oxygen. Normal air we breathe is 21% oxygen and while we held her she was getting 40%. Yesterday she started at 4.0% pressure and it was turned down to 3.0 today. John follows all of her numbers and just explains it to me. They want the pressure down to 2.0 before she gets any food. We don't fully understand this seeing as they will first put my milk through her feeding tube. Here she is smiling at Daddy. :)

Once sweet Grace was awake it took awhile for us to calm her again. I held the pacifier and her fingers while John tucked her in and patted her. Today was the first day that she hasn't had one nurse to herself so before we left we wanted to make sure she was settled. John and I left the hospital feeling discouraged. It is hard to watch your baby knowing she is hungry and all that can be done to comfort is swaddling and a pacifier. And too, we heard a baby crying for a long period of time and I think we both wonder if that could be Grace tonight.

On the way down we were listening to the radio and a remake of the hymn "Praise to The Lord The Almighty" came on. One of the verses says, "Ponder anew what the Almighty can do". And it made me reflect on this past week and ponder. Oh yes, The Lord has been doing amazing things in our little Grace and we entrust her to His care.

Please pray with us that Grace would be able to adjust her breathing so her pressurized air level can come down and our hungry girl can take in food. And that we would be patient with this whole process.

Sweet Sound

Today we found Grace under the bili lights. She is just on the line of needing treatment for jaundice but seeing as she has yet to get any food they put her under the lights. She is now breathing above the ventilator and her sedation meds were totally turned off in preparation for EXTUBATION!!!

And then we wait. First for the doctor to finish his lunch, which was extremely long today, and then for him to put in the order. Even Tia, the nurse, was anxious to get on with the show.

We also are figuring out this whole hierarchy of the doctors, fellows, and residents. The attending physician in the NICU overseeing all of the care is on for 2-4 weeks and then it rotates and that doctor goes to another area or does research. The attending during this time I have mentioned before is Dr. Konduri and his specialty and what he is known for is what Grace was diagnosed with - Pulmonary Hypertension. What a God thing!

The order came through and the respiratory therapist along with the nurse took Grace's ventilator tube out. Another doctor came to watch the "big event" and one of the doctors who worked on her when she arrived came to check on her. I love how involved everyone is in each of the babies care and cheer them on and encourage the parents.

As soon as the ventilator was out they put a nasal cannula on to pump warm humidified air with some increased oxygen. Her chest was retracting as she adjusts to totally breathing on her own and her air passages are a little swollen from the irritation of the tube which also makes it a little harder.

The nurse put Grace on her belly and her oxygen level went from 94 (which causes the machine to beep) to 99. We heard a little cry but then she settled in. Another good sign that she is handling breathing on her own is when given a pacifier she began to suck as if she was getting something from it. It takes work to breathe and suck at the same time.

Grace also is more alert being off of all meds so she fluttered those eyes open and began looking around. Just what we have been waiting to see. Unfortunately, they had to put her right back under the bili lights which meant her eyes had to be covered. And after all of the changes today they wanted Grace to stay put. She still has the tube to her stomach which she likes to hold.

Before John and I left for the night our little girl decided to start wiggling around and we were able to hear the sweetest sound that we have longed to hear -- a real true cry.

The steadfast love of the Lord never ceases;

his mercies never come to an end;

 they are new every morning;

great is your faithfulness.

Lamentations 3:22-23

Watching and Waiting

We are learning that the hardest part of this whole process is the watching and waiting. One moment it looks like progress is being quickly made. But the next it seems we need to wait longer.

John was excited to come down to Children's again today after so many positives on Tuesday. A bit of nerves is always involved on our trip down. My cousin encouraged us with her life verse and so I read that while we approached the hospital. Isaiah 26:3-4.

You keep him in perfect peace

whose mind is stayed on you,

because he trusts in you.

Trust in the Lord forever,

for the Lord God is an everlasting rock.

John really wanted to see his little girl open her eyes again. Especially since she was looking around for an hour on Tuesday. Unfortunately, today we only saw them open for a minute. John said it was okay, he was just happy that I got to have that experience.

The morning always is a time of watching. Grace has been reduced on the amount of sedatives but she still enjoys sleeping and they are trying to get her woken up a bit more to be able to handle a different ventilator. The doctors were able to decrease the amount of nitrous oxide from 10 to 4 today and she tolerated it well. They also kept lowering the pressure on the oscillator for her ventilator and she tolerated that. All good. And all signs that she can be moved to another ventilator yet today.

Grace seems to prefer her right side as when they flipped her her oxygen went up and stayed consistently at 99. They move her from side to side or to her back to help with swelling. The side she lays on will puff up and looks quite funny when she does get moved.

Our bit of excitement -- I was able to swab out her mouth with some of the milk I've been pumping for her and she licked her lips afterwards. We saw her have hiccups and blow bubbles. It's the little things.

I spend some of my time in the relaxing rooms pumping milk for Miss Gracie.

In a previous update I saw they decided against a picc line but I must have misunderstood what they were saying. I must say, my mind is quite a blur lately. Thankfully John is usually there to explain everything. They did decide that Grace needed a picc line so that she could receive nutrients but more than that the lines that are in her belly can only be there for 7 days or infection can set in and so they wanted one central line for everything. It was later in the day when they started looking for a good vein and our little girl wasn't too happy about that and was kicking and moving her arms around. So for the procedure they did have to sedate her more. It was supposed to take only an hour but it was another waiting. John and I started to worry a little bit when it had been almost two hours without word. Thankfully the nurse came out and got us at that moment.

The picc line was put in her right arm and the first time they got it in and took an x-ray it curled up and being that they wanted it as close to the heart as they could they did it again. We were able to see the x-ray and that is quite amazing to see the picc line and her ventilator tube going to her lungs and one tube to her stomach and various other lines. They will check the placement again a few times to make sure it doesn't go too close to the heart.

We had a late day waiting and while they were going to move her to the new ventilator we were too tired to wait any longer. I honestly have no idea what going to another ventilator really means but John does because he saw her on this one at St. Joseph's in her first day when she could not tolerate it. I guess I'll have to wait and find out.

Specific Ways to Pray:

- Grace would do well on the new ventilator and that we'd be able to hold her SOON!

- We have a few coughing kids that need to get better so they can meet their sister.

- The separation is getting hard on all of us and attitudes are really showing it. Some of the kids just want to stay home. And some just really "need my parents".

- My continued healing. As always I start taking things too fast since I feel okay but then I overdue it and can feel it!

- John as he balances keeping up with work from afar, going to Milw. every day and running our home. He is quite amazing anyway in my opinion but I think it is getting hard.

Positive Changes

This morning John called Children's for an update right away and Grace had been stable through the night and they had not been able to insert the pic line. They had wanted it to use for more nutrition as right now she only gets sugar water and electrolytes through the IV's in her belly.

John has been with Grace for 4 days with no real significant change and decided he needed a break so he took the kids to their homeschool class then went to work for the morning. Mom and Dad took me down to Children's hospital. I texted John all throughout the day and soon he was wishing he had come down to see all of the improvement she had made.

First off, the Surfactant (click the word to learn what that is) they put into her lungs yesterday made what Dr. Khalil said, "massive improvements, massive" and tipped the scales in her favor. He was very optimistic. At one point today he told me that Grace "is motivated". The first thing we noticed was that she was moving around so much more and that was because they decreased Fentanyl that had sedated her. They want to get her more awake.

After lunch she was really awake rather just flailing around in her sleep and her eyes were open and looking around for about an hour. Oh my! That was so wonderful to see that newborn kind of dazed look where eyes go every direction. Of course that was at the end of our day and it made it much harder to leave. Which made me wonder what I'll do when she is awake and without the ventilator.

She is on the ventilator but they were able to decrease the amount of oxygen they gave her. She had been given 100% when she arrived. Yesterday she was given 88% oxygen and today it was down to 47% when we arrived. As the day went on and they began to decrease medications they did have to go up again to 60% which made the doctors decide not to be quite as aggressive and let her get used to one before starting another.

Dr. Konduri (the world's best doctor for pulmonary hypertension) decided that Grace will not need a pic line inserted for nutrients because he doesn't think she will need them in a few days if they gradually get her off of things. He did begin lowering the nitrious oxide which is what has been opening her lungs. The Doctor is doing a study on Pulmonary Hypertension and Grace is now a part of that study. As I walked around today I saw a group of doctors all discussing and learning from the "top doctor".

Grace is slightly jaundiced but they aren't concerned about that right now, especially since she hasn't eaten yet.

Yesterday's ultrasound of her brain showed no blood clots. We are still waiting on results from the EEG on her brain but they need a top specialist to read that with all of the other variables Grace has going on in her body.

We wondered if Grace was truly a preemie being that she was so close to 36 weeks. Technically she is but they aren't really looking at the age so much as the symptoms she exhibited. And most of them were a result of such a traumatic birth. If she would have been born at this same gestation by a normal c-section most likely she would have been home with us.

The talk is that we may possibly hold her in the next day or two. John and I are looking forward to that day so much. And we are so thankful for the direction God is taking Grace. As my Dad said, just because we see improvement doesn't mean we sit back and say, okay, things have improved and be lax about praying. No, we will continue to lift little Gracie up to the Great Physician and praise Him for His goodness to us. So many things could have been different and we recognize that and our Thanksgiving this year will be all the sweeter for the realization of all we have been given in the past week. So overwhelming.

Thank You for outpouring of love on our family! We are also learning how the body of Christ should function, helping one another and then us being willing recipients of that help.

Love to you all,

Amy for the Masons