3 little Miracles

3 little Miracles

Sunday, October 31, 2010

Baby Girl {Hospital Notes}

Day 10

(transcribed from diary I kept in Rachel's NICU space)

It is Halloween and we are not where I ever expected us to be, had things gone the way we had expected, Rachel was scheduled to arrive yesterday and we would have been celebrate  our first Halloween together as a family today.  Instead we are not together and I am missing a day our family truly loves, getting them dressed up in costumes, going to the church Harvest festival and eating our favorite pieces of candy before bed.  I still plan to dress Rachel up sometime today in the special outfit I had planned for her, hopefully we have a good day ahead of us.

Rachel made it to 65cc's overnight with feedings w/o spitting up.  In addition her heart rate dropped down after one of her spitting up episodes (a brady or bradycardia).  

Only  did 35cc @ 4:00 feeding and she threw up most of it.

Dr decided to put Rachel back on IV fluids this afternoon because she is not tolerating her feedings very well, in addition they have placed a feeding tube back in to start feeding her again after giving her stomach a rest overnight. In the morning they will retest her platelets and decide what action to take on the platelets and her feeding problems. The roller coaster comes back down once again and I feel like I can't handle this ride.  I am trying to be strong but every time we seem to be moving closer to leaving we have a huge setback.

Tonight one of our favorite nurses is on duty so I know Rachel will be in good hands.

*they did the x-ray and is showed no problem with her stomach, but for the night they are going to give her stomach a rest and push IV fluids and when they round in the morning they will go over everything.

Tonight David and I got to have a night out at a nice restaurant down the road from the hospital thanks to our dear friends Billy and Margie.  I know I should have been able to fully enjoy our evening, but I kept on thinking of the horrible day we had and Rachel back at the NICU going back onto IV fluids and feeding tube.

Afterwards we went back by the hospital to visit our little girl before going back to my little RMH room, thankfully David was with me for the weekend and it was nice to have this strength with me.  The nurses had tucked her back into her bassinet still wearing her little Halloween headband and blanket.

Note found in my notebook from nurse Ashley:

"It is a pleasure to be able to take care of your adorable sweet pea . . . she has won my heart already, and we've only just met!  I will take home thoughts of her & your family, and look forward to being her nurse again soon!"

Ashley V. RN

Happy Halloween from Rachel and Update

Rachel update:

Rachel is still in the NICU, she presently dealing with two major issues medically, her platelet levels are low and she is not tolerating her feedings very well.  The doctors will retest her platelets in the morning and explore options on how best to deal with her problems feeding.  For now they are giving her stomach a rest for the night and have rehooked up her IV fluids.  They may go back to a feeding tube in the morning until they are ready to retry the bottle later in the week.

Thank you all for your continued thoughts and prayers, we are trusting the Lord will bring our little girl home to our family soon.  For now I continue to live at the Ronald McDonald house to be with her every day.  What an amazing ministry they do for families with loved ones in the hospital, I know we couldn't be staying this close without their help. 

Saturday, October 30, 2010

Baby Girl and her visit from Big Brothers and Cousins {Hospital Notes}

Day 9

(transcribed from diary I kept in Rachel's NICU space)

Well today is the big day, my nieces Cassandra and Calli are going to bring the boys up to meet their little sister, they have moved Rachel to another spot on the unit (they call it a step down to a less "critical" care unit but still within the NICU).  

Her platelet levels are still a issue but the retest is still being held off until Monday (still not happy with it).

Currently she is taking in 45ml of breast milk/Enfamil combo by bottle w/ green nipple and has now moved up to 50ml  (36.3 grams down 8 grams)

Taking out IV fluids for now to see how she tolerates it.

The visit with the boys overall went very well, Davey seemed to be the most excited to see Rachel.

Jonathan seemed very upset in this photo and didn't really want to sit there.  He later revealed to me that he was upset because we said he was too small to hold onto Rachel (I am not aware that either of us said he couldn't hold her and I hate that he got that impressions).

I wanted to make sure that I spent some time just with the boys, so I brought several books to read to them and we also took them out for dinner.

My oldest niece Cassandra

My niece Calli was very emotional holding Rachel and kept saying "she's so beautiful" over and over.
Rachel truly is beautiful and I wish so much I could be inside each of their heads to truly know what they were thinking and how they felt hearing Rachel had Down Syndrome.  I also wish I knew how to explain to the boys about DS and know how they felt.  I have been carrying this by myself (or at least it feels that way) for over a week now and I just want to know how everyone feels.

Friday, October 29, 2010

Baby Girl {Hospital Notes}

Day 8

(transcribed from diary I kept in Rachel's NICU space)

Arrived at 8AM for overnight report and then walked down to the cafeteria for breakfast while the change of shift was happening and returned at 8:35

Morning report:
Platelet 56
CBC's showing an infection, planning to retest at noon
9AM feeding only did 30ml and spit up.  Going to let her rest and try with increase at noon to 40ml with a slower nipple on the bottle
The lactation team is recommending Fenugreek to help with my milk supply 3 tablets 3 x daily 

Noon Report:  Platelets even lower into the 40's but not showing infection, hematologist wants to wait until Monday for retest (which I am not comfortable with).  It does not make sense to me why they would wait ALL weekend to retest when she is already at low 40's, are we going to wait until she drops to a critical point before taking action!!!!

I can't keep taking this roller coaster ride alone, I need David here with me hold onto, to vent with, to help question things, I can't take this much longer.

**Update:  Feeling so blessed, between Hilary, Mom, Dad, Cassandra, and Calli they all pitched together for David to hop in the car and come rescue his overwhelmed wife and spend the night. Cassandra will bring the boys for their first visit with Baby Sister tomorrow. I am feeling more peace with David by my side. Rachel is resting comfortably and on his way here he picked up the recommended Fenugreek so hopefully with him sharing the stress and these pills BOTH Rachel and I will have a uphill swing this weekend.

Bright Spot in my Day

The bright spot in my day today was seeing this sweet picture from Jon's preschool Halloween day that hubby sent to me via cell.  Wish I could have been with him :-(

Thursday, October 28, 2010

Baby Girl {Hospital Notes}

Day 7
(transcribed from diary I kept in Rachel's NICU space)

Last day of antibiotics
Visit from CDSA - Child Development Services Agency
     They will be "social workers" to supervise Rachel's medical care and make sure we are getting all the medical and therapeutic are that is available and/or needed throughout Rachel's first three years of life.  They will connect with us about 3 months after Rachel is out of the NICU OR when Rachel is 3 months old which ever comes sooner.

They will check Rachel's thryoid tomorrow and platelets
Should be @ 30ml of breast milk, goal is 60-70ml

Saw genetics doctor again today at 1PM, Dr. Humberson) more info that I can't really seem to take in right now but I did catch that by age 5 or 6 is when most DS parents typically know most of their child's health issues that they will deal with during their life (major health issues).  So does this mean 5-6 more years of sitting on pins and needs waiting for the other shoe to drop, not sure I can take much more of this.

**Please pray for Rachel tomorrow, she will have another platelet test in the morning, so far they have stabalized at 72 and the doctors are hoping they will be 100 or above tomorrow. Her Hematorcrit and White blood cell count has come into normal range and so far Rachel is tolerating her feedings really well, they are hoping to release her Monday. Thank you all for your prayers, Rachel had a good day today!

Wednesday, October 27, 2010

Baby Girl {Hospital Notes}

(transcribed from diary I kept in Rachel's NICU space)
Day 6

Little Rach got off her oxygen 100% today, YEAH! AND they even got her dressed up in one of her cute sleepers  Grandma H got to hold Rachel for the first time today and they had a good time with Grandma's songs that she always loves to sing to her grans, it's been a good day for our girl.

I know it is a little crazy, but I brought receiving blankets and clothes for her and I was so happy to see the nurses had not only dressed her but also wrapped her isolette mattress with one of her blankets to make her feel more at home.  I also taped up a picture of our family inside her little isolette so she could see her family all day long.

  • Off Oxygen 100%
  • Unable to put in Picc Line so they are going to try and continue to use her normal IV lines
  • 20 ml of breast milk and on a regular feeding schedule
  • Platelet 73 with a goal of over 100
  • Hemaglobin where its supposed to be
  • White blood cell count fine
  • Antibiotics should complete tomorrow
Pictures of the day

My mom holding Rachel for the first time

 Bottle feeding Rachel breast milk.  Normally I will get to actually BF her, but today I was having a very bad physical day and I was not up to the task.

Letter to Rachel I started but never finished:
"Dearest Rachel,

Your now six days old and you are such a precious gift and you seem to improve each day with God's care.  You have been in the PITT NICU unit in Greenville, NC since the day you were born and airlifted from Craven Regional Medical in New Bern."

So much more to say but it is hard to put my feelings down right now.

Wordless Wednesday

Tuesday, October 26, 2010

Baby Girl the big DAY with Genetic Councelor {Hospital Notes}

(transcribed from diary I kept in Rachel's NICU space)
Day 5
The genetics counselor came in today to talk to me more specifically about down syndrome otherwise known as Trisomy 21.  We have known for days now that the official test results had come back that she had DS but we hadn't heard the specifics of the findings and what it ALL means and they wanted to wait until I was a little stronger.  Unfortunately David couldn't make it back up to be with me for this and so I faced it alone and physically on my worst day.

I will be honest and say I didn't hear a word she said to me.  I felt like I was in a Charlie Brown cartoon and she was the teacher.  I wanted to shout and her and tell her to go away.  I am devastated that Rachel has Down Syndrome but she has so many other medical issues right now, I can't deal with what I can't change. I have a pile of pamphlets now and even a book on DS but I can't even look at them they are at my side but I feel like if I reach for them it makes all of this so much more real.

These are the notes I did write while she was talking:
Trisomy 21 - not hereditary (so if Rachel wants to have children it doesn't mean she will pass it to her children AND the boys don't need to fear that they can pass it to their children in the future).  All I was thinking as she said this was . . . like Rachel will ever be able to marry and have children now, those dreams are washed away she isn't normal like other kids, those dreams are smashed.
Normally there are 46 chromosomes, Rachel has 47 which is the #21

All I do is sit here in the chair beside her isolette and then once every couple of hours go down the hall to the private breast pumping room for 30-45 minutes and try to pump as much as I can for them to give to my little girl. Every drop is liquid gold, but it is costing me.  I have even been packing a lunch from the RMH kitchen/pantry so I don't have to leave her side all day until the last shuttle of the night takes me back to my little home away from home at RMH.

(transcribed from diary I kept in Rachel's NICU space)

Today was a good day for Rachel

Billy Light will be removed today because her jaundice levels have come down to 11.7

Picc Line being put in today (they have asked that when they prepare to do that I leave for a while, go rest or get lunch).  I hate the idea of stepping away for any length of time, but they say it is too hard on the parents most of the time to watch their newborn go through getting a Picc Line and in Rachel's case it is particularly hard to do.

In addition today they started trying to give Rachel breast milk that I have started pumping.

Heart Rate = green
Respiratory Rate = white

Pulsox (oxygen in blood) = teal

Monday, October 25, 2010

Baby Girl {Hospital Notes}

Day 4
(transcribed from diary I kept in Rachel's NICU space)

Platelet 9200 {UP} goal 150,000
hemotologie Dr. Dashner
IV-IG = globulon antibody

Rachel may have antibody to her platelets

Dr. Humperson geneticist came to talk to me about Trisomy 21, said a few things about Down Syndrome but really didn't want to go into too much until all of Rachel's genetic tests come back.  Honestly not sure I heard too much of what she had to say.

Dr. Nailer - Attending Physician (LOVE HER)

Pulminary much better onto lower oxygen

Billy Ruben still high - currently 13

Hematinics in better range

In other news they informed us we had a room at the Ronald McDonald house late today and so David and I drove back home and I finished packing, had dinner with the boys, and kissed them goodbye.  I hated leaving them, what should be a joyful time of a new sister for them, is filled with uncertainty.  I know they can see the sadness on my face but I feel helpless to change any of it for them.  

David he drove me back up and settled me into the room for the night.  All I can tell you is that I clung to him tonight before he left, I did not want David to leave, I didn't want to be alone to face what ever is ahead for Rachel. So for now I will distract myself from all of that by settling into RMH and will rest for a bit before Hilary (my niece) picks me up after class over at ECU to go visit her cousin for the first time. Can't wait to see Rach again today and hopefully get a chance to hold her this time (didn't get to do that earlier). 

Here are a few pictures from Hilary's first visit

One Hilary took of me and one of the many headbands I had for Rachel (it's the only time I get to play dress-up with her or have any link to the things I wanted to do if everything had been "normal").

**Back at my RMH room and falling into bed, it has been a long day and I just want to sleep if I can and get on the shuttle early in the morning and go be with my girl.

Sunday, October 24, 2010

Baby Girl {Hospital Notes}

Day 3
(transcribed from diary I kept in Rachel's NICU space)

I was released yesterday afternoon from the hospital and we drove straight to Rachel an hour away at Pitt Memorial Children's Hospital where she had been air lifted on her birthday on 10/21 a few hours after her birth.  Since her birth my arms have been itching to hold her, to touch her, to coo sweet words of comfort to my new baby girl .  I can not yet explain my feelings of this moment or how I felt yesterday during our visit, they are to raw and I am way to overwhelmed.  All I can tell you is that I feel loved and supported through what we are going through and yet I feel so alone like I am in a island of my feelings which even I can't explain.  I didn't want to leave her to come home last night, being an hour away feels like we are thousands of miles away and that is way too far.

That distance felt even further apart this morning when we got a call at 6:30AM just as we were starting to get ready to leave to go back up to see Rachel.  They called from the NICU to inform us that Rachel's platelet count was low at 1600 and they were asking permission to do a platelet transfusion.  The doctor informed us of all of the risks (which were scary and I can't remember now) but the risk of not giving her one was even worse.

By time we got to the NICU the platelet transfusion had been done and we spent most of the day with her just sitting on stools and sticking our hands in through the portal to touch her in her isolette, we did get to hold her for small bits of time which I was greatfull for since it was my first time holding her.  I didn't want to leave and I was physically worn out and crying.  We were approached by the hospital social worker and they offered to try and get us into the Ronald McDonald house which was directly across the street behind the hospital.  Although I don't want to be away from David and the boys, we know I couldn't physically keep up with driving back and forth each day and I do not want to be away from Rachel . . . I don't want to leave her side.  So we have made the decision to move me up to the RMcD house if they had room and David would stay with the boys and keep them on their regular school schedule.

So for tonight we will once again go back home, but I will pack and be ready for the news of hopefully a room.

(transcribed from diary I kept in Rachel's NICU space)

Our beautiful girl!

Rachel is still in the NICU in Greenville but doing a little better.  When I have the mental stability to write it, I will sit down and tell you about her birth story, not only for you but for myself as well.  God has brought us through so much in the past three days and I know He will watch over and protect us through all that still lays ahead.

For now I will share that Rachel was airlifted from the hospital where she was born  on the 21st, because of her struggles breathing, her white blood cell count, and an enlarged heart.  The pediatrician warned me that they may have to do heart surgery on Rachel but they would know more after doing an Eco.  When she arrived in the NICU they did a series of tests including the Ecocardiogram and they determined that Rachel's heart was a little enlarged but that was probably due to the stress of the birth.  What they determined to be the problem was a valve in her heart that is supposed to shut off and seal shut after birth allowing for proper blood flow from the heart to the lungs and it had not closed, thus the breathing issue.  The doctors felt that this problem would correct itself over the next 24-48 hours after her birth, so far this problem as continued to improve each day.
When Rachel was placed in the unit, she was under an oxygen hood and Friday night they were able to take her off the hood and put her on oxygen nasal cannula's.  This blessed improvement meant that when I was released, we would be able to come and hold her for the first time.  Of course my husband got to hold her briefly in the O.R. but I had not yet done anything more then hold her finger tips prior to her being airlifted out, you can't imagine what that does to a mother when she hasn't held her baby under these circumstances.  Other concerns continue with Rachel such as her high white blood cell count, her low platelet count, and of course her pulmonary issues and presently she is being feed through a tube.
This morning we got a call very early, that Rachel's platelet count had dropped to a dangerous level and they were going to need to do a platelet transfusion.  We hope and pray that daily Rachel will continue to improve and that we MAY be able to take her home late next week.  They are currently working on a room at the Ronald McDonald house so I can stay up there for the week and be near Rachel more often and hopefully feed her when she is ready for that.  Please continue to pray for our family and Rachel.  I am an emotional roller coaster as you can imagine between all that is happening to Rachel, the shock of her health, trying to heal from the c-section, and the hormonal overload I still seem to be under.  We already know we are surrounded  by a thousand prayer warriors and our local family and church support is amazing.  So many have walked in the shoes we are in right now, but when your doing it yourself you sometimes feel alone in it.
Thank you for all of your sweet comments, they do a lot to lift me up when I think I can't go any further and yet I know we still have a long way to go.

Friday, October 22, 2010

More pictures of Rachel

Rachel in the O.R.

Rachel in the NICU
Just a few things they will personalize her basinett with when she is out from under the oxygen hood.

A difficult and yet Joyful post to write

Rachel Elizabeth-Marie was born
6 days early
October 21st at 12:46
7 lb 9 oz, 20" long
(Taken with my husbands cell phone)

I will update you with more details when I can, but please pray for our little girl, Rachel was medevaced a few hours after she was born.  They had concerns for her heart which was enlarged and also her breathing.  I am getting some good reports from the NICU nurses when I call, but we will not know all results for about another 24 hours.  Rachel is under a oxygen hood and is being very carefully monitored.

It is very difficult because at this point I have only been able to brush my fingers on her head in the O.R. and hold her little hand just prior to being medevaced. I am longing to hold her in my arms and let her know Mommy is here for her.  Just please lift our little girl to God because He is the great provider and He will take care of her as He has throughout this pregnancy.

Wednesday, October 20, 2010

Tuesday, October 19, 2010

Tuesday's List - Fall Fashions

Over at love from texas, Jessica is doing Fall Fashions for this weeks Tuesday's List.  These days I am still obviously living in maternity clothes and I have no clue how soon I will be able to switch back to NORMAL clothes.  In the fall you can usually find me in a pair of of jeans and a nice comfortable t-shirt.  But I am praying that I will  be able to quickly recover from the c-section and get back to the gym to take off some of the baby weight gain, so here are my picks for fall fashions post pregnancy.

I have already ordered this black knit shelf bra dress from Casual Living USA.  I already have several nicely cut denim shirts/jackets to wear with it and all I have to pick up is a pair of boots and I have a great comfortable fall outfit.  ONLY problem is that it won't be easy to nurse Rachel in this dress.

I am loving the sweaters and vests I am seeing in the fall catalogs, I love layers and I think both of these styles from J Jill provide a nice fashion statement.  AND I think my new "black" this fall is going to be Grey.  I love this one from Soft Surroundings, I just bought one similar in black to go with a dress I have, but all three of these styles would also be fantastic layered with jeans.

I KINDA like this dress from Avenue, but I am not overly comfortable with the skirt lenngth of dresses this fall, most skirts are just slightly above the knees and I am more of a below the knee kinda girl.
This one from Soft Surroundings in more my style and is very flattering to a plus size figure.

This is a post I wrote about a week ago on this same topic if you would like to see more of my fall picks.

I feel like I have been in maternity clothes so long that I have no idea where my body will be post pregnancy and it's hard to even think about Fall Fashions, but I would love to see what you think is hot for the fall.  Hop on over to Jessica's blog and post your hot fall picks with Tuesday's List.

Friday, October 15, 2010

Remembering our Babies

Remembering our Babies
October 15th
October 15th is Pregnancy and Infant Loss Remembrance Day. I have been blessed thus far that all of my pregnancies have carried to full term, and I am praying the same will be true for my sweet Rachel due on October 27th.  However, so many have suffered the loss of their sweet angels and I ask that you take a moment to remember those who have suffered the loss during pregnancy or of a infant shortly after birth.  Lift them up to the Father that heals all our hurts and know that heaven is singing sweet lullabies to these sweet little ones that left our lives way too soon.

Remembering our Babies website

Show Us your Life - Offices

Kelly's Korner is hosting Show Us Your Life - Offices today and although we have seriously had to downsize our office due to making room for baby #3 we still have an "Office Corner".  We moved our office into our master bedroom along with an office storage closet within our walk-in closet that is still in progress of construction.
My husband just finished construction on this bookshelf unit about 2 weeks ago.  I still have more of my design books for architecture and interior design school in storage, but we love the finished product.
 I built this desk for my husband for his 40th birthday but we had to modify it and downsize it some for it to fit into our room.  We plan to move a family picture to the living room once Rachel arrives and put a flat screen TV on the wall in it's place, freeing up some valuable desk space.

Of course these days, this is where most of my blogging happens:

This is where our office used to be (an no it was not ALWAYS a mess)
If I had what I truly wanted, I would have a home office that looks like this and much more functional for home crafting such as scrapbooking, photography, and kids crafts.