Thursday, December 8, 2011

Movin on up, to the south side

It was really hard to get good pix of bath time. McMama was pretty excited though.
We stuck around a little later tonight to learn how to give Jackson a bath and were glad we did. He gained two ounces for the second day in a row, bringing him up to 3lbs. 15oz. We'll have a 4lb. baby by the weekend.

I stayed in the room most of the day to get caught up on some homework so Jenny got to hear most of his other good news first hand. We haven't completely decided how excited to be about this, but he's going to be moved to a different area of the NICU known as "south," probably tomorrow morning. Funny that they call it south since it's about 10 feet farther south than he is now. They sold this as a positive thing for him. Apparently this is where the all-star preemies go.

It is a lot different than where he is now. For one thing they only allow six babies at south, which means he will be receiving more direct care. Not that there was anything wrong with his care where he has been the last two weeks, in fact we thought it had been phenomenal. The new area is one open room, so the nurses will have a close eye on him and be able to get right to him if they should need to. Hopefully they don't.

We've grown pretty comfortable where he is now and are not sure about the transition to what is a smaller area that seems a little less high tech. On the positive side, it doesn't have to be as high-tech because these babies don't need as much special care.

Jenny got to talk to the discharge nurse today and had a lengthy report for me of the things Jackson will have to do before he can go home. The positive that I took from the requirements was that there is no minimum time. We had originally been told that babies are never sent home before they reach 36 weeks gestation, and this may prove to be true with him, but there is nothing that says he has to wait that long. He has to wait two more weeks to get his initial vision test, but it is possible that he could pass all his other tests by then or shortly after. We aren't expecting this by any means, but it was nice to know that there is at least a possibility of him coming home three weeks from now.

Visitors will be limited
Because his new area is smaller and farther from the NICU waiting room (pretty far actually), we are going to have to limit visitors even more than we have already. In addition to the smaller space and distance to the waiting area, the nurses have started warning us about RSV season. A March of Dimes volunteer told us tonight that when her baby was at the NICU during RSV season, they didn't allow any visitors other than the baby's parents and siblings. We're not going to be that strict yet. We haven't decided what limited visitors is going to mean yet, but please understand that this new area is going to make it much more difficult to accommodate guests.
Hopefully his last night with the general population.

Come on Mom!

Thanks for my clothes Miss Heather. 

Wednesday, December 7, 2011

2 Week Birthday

                                    Jackson is two weeks old today!

                                 


                               Family Photo!

     


Did you notice his stickers are finally off his cute little face?!  YAY!

We had a nice day today.  I got to hold Jackson a lot today. It was wonderful!  We even took a little nap together.  He is continuing to nurse really well-impressing all the nurses and lactation consultants!  I get to nurse him at his 11:00 and 5:00 feedings.  Hopefully I will get to do that more often.  For right now, it just wears him out.  Other updates for you all:  Jackson's Nutrition Panel came back-it determined he needs more protein.  The protein is a powder that is added to his milk.  They bumped up Jackson's feedings to 33 ml, so hopefully he will gain more oz.  The nurses sent the state mandated testing lab work off to the state.  This test checks for 50 different disorders.  We will know the results of this in 2-3 weeks.  The nurses had him lay on his back again today...it didn't go so well.  He continued to have too many desats while on his back that they had to put him back on his tummy again.  He cannot "graduate" to a crib until he can maintain breathing well on his back. 
Thanks, Baba, for my cozy outfit!  I'm sure you can rest easier knowing my toes are finally covered!  ; )

Tuesday, December 6, 2011

Puttin on the o-z's

Jackson had another good report today from his Doctors.  Thank you again for all your prayers and support!

  • He has gained more weight!!  He now weighs 3lbs 11oz!
  • His bug zapper (as his daddy calls it) has been off for two days, which means he gets to wear clothes again!  YAY!
  • He only had 2 alarms last night.  The alarms signal when he is DESATing or having a brady.  The night before last he had 13 alarms in a 24 hour period, and before that he had 34 alarms in a 24 hour period.  So big progress! 
  • Tomorrow morning he will have a 32 week state mandated test screen (ugh...even on maternity leave I cannot escape mandated testing!!!)  This testing will include nutritional panel lab work that checks Jackson's electrolytes, calcium, phosphorus, and other fun stuff.
  • Jackson is not anemic!
  • He is tolerating his food most of the time.  He had another x-ray of his tummy, but again it looked just fine.  His tummy just gets really full after feedings and he sometimes doesn't digest it well.  He still needs help to poop with a glycerin suppository sometimes.
  • Jackson LOVES to sleep on his tummy.  He is beginning to get too comfortable on his tummy and only wants to sleep that way, so we are trying to have him sleep more on his back.  Although he desats more, this is something he has to accomplish before he gets to go home.
  • I have started nursing Jackson twice a day.  Although I'm still struggling with my milk coming in, the nurses and lactation consultants have all commented on how well Jackson is nursing. They were surprised at how well he was doing and said he was acting much older than a 32 weeker. 

    Mommy sure does love her boys!
    Baba touching her grandson for the first time.
    
    Jackson finally got to meet his Uncle EJ!  Grandpa B came to visit, too.
     
                                      
                                                 Jackson met his Great Grandma Shirley and Great Grandpa Jim!
     
    We love our Platte County Pirate family.  Thanks again for your support Pathfinder and Barry!
    Oh, does Mommy LOVE these cheeks!!!  Mommy can't wait until I can get all these stickers off my face!  One was for his sunglasses, and one was for his nasal cannula.  The nurse tried to take them off today, but she said they were still too sticky to take off, and she didn't want to irritate or hurt him.

Monday, December 5, 2011

The power of prayer

For most, if not all of you reading this, it probably is almost unnecessary to comment on the power of prayer. You already understand it. This has become increasingly obvious to us over the past two weeks. 


Today we received our third "prayer gram" through the mail. These prayer grams have come from Hendersonville, Tenn. Our awesome brother-in-law, Wes is from Hendersonville. His awesome mother (with an awesome name), Mary, is part of a prayer group there that has been praying for our family and have been sending us the prayer grams with short messages and scriptures.


In Chicago, Jenny's awesome sister Kate has organized a prayer group that literally has Jackson covered with prayer, 24 hours a day. My grandparents visited Sunday and told us that one of Jenny's co-workers who attends their church, asked for our family to be added to their prayer list. An old church camp friend of our's delivered food last night and said that we have been in the prayers of a scripture study group at his church in Indpendence. 


We know of seven different churches praying for our family, not to mention all the countless others praying for Jackson's health. I'm here to tell you that we are witnessing the positive results of your prayer. 


Jackson continues to amaze us and has went from acting his age, to acting a little bit older than his age. We sometimes feel bad when other NICU families ask us about how our son is doing. We get to brag on the little guy while some of them continue to battle challenges that their babies face. Please keep them in your prayers as well. 


We recently met a NICU dad who's baby girl was born at around 24 weeks. She was barely over one pound and things weren't looking good. He was very upset and concerned. Jenny and I tried to console him as much as we could in the waiting room. Helping us was, Jackson's roommate's grandma. I believe her name is Frances. She told this dad that he had to have faith. She said, "I don't know how you feel about prayer, but it really helps." She's right, it does help. He said he was trying not to get too hopeful, that he knew the possibilities, and he didn't want to fall far if things didn't go well. Unfortunately they didn't. The next evening we learned that his daughter did not make it. 


It was hard to see. It was hard to watch our son buck the odds while another baby a few feet away could not. It inspired us though. We have realized how fortunate we are to have strong faith and a support system around us that can lift our family up in prayer. So we decided we would do the same for others. 


Each day and night, as you all pray for our son and our family, we are praying for the other families and their babies. We pray that their children will fight and persevere the way Jackson has. We pray that they too will find the faith and power of prayer that has guided us through our experience. 

Matthew 21:21-22              

Philippians 4:6-7
I'm sorry Jax. Mom made me post this one.



Sunday, December 4, 2011

2 Weeks Ago Today

Two weeks ago today our journey of becoming parents began.  I know this one is a bit lengthy, but to be honest, I wrote this specific blog for myself.  It is our birth story.  I have been working on it throughout the week, and I was starting to get events and details scrambled.  Nick helped me recall many of the details.  I want to always remember our journey and the events that led to the happiest day of my life:  the day I became a mommy.  


Sunday, November 20th:
                I woke up with low, dull back pain.  Actually, I had been having back pain for a couple of days.  My in-laws were coming to our house to help us with some home projects.  Randy fixed our front storm door.  Nick and Randy fixed our bathroom sink that had been leaking and installed a new door in the basement.  I was thrilled, but in a lot of pain.  At one point, my mother-in-law Mari asked if I was alright.  I started crying and said my back hurt really bad.  It was constant back pain…it never let up, except briefly when we were eating lunch.  Lunch that I had hoped to prepare for my in-laws in appreciation for helping us, but Mari graciously finished for me.  I did my best to ignore it.  EJ (Nick’s younger brother) had gone to a church retreat and was heading back to St. Joe so Mari and I went to go pick him up.  I felt bad that I was irritable and probably cranky towards my family who came and worked all Sunday afternoon.
                That evening I took a nap, hoping it would relieve the backache.  Nope, it still lingered.  Finally, around 7:00 PM, I called the Dr. on call at St. Lukes North on Barry Road in Kansas City.  I explained to her that I had had a low backache all day.  It was constant.  The doctor said it did not sound like it was contractions, but she did not feel comfortable assessing me over the phone.  She said I needed to come to the hospital and be checked out.  Nick and I left in a hurry, bringing nothing with us for the drive to Kansas City.  I even teared up and told Nick that I felt foolish, that I knew they were going to send us home and I was being over dramatic.  I thought they would say, “Well lady you are pregnant.  Of course you are going to have some back pain.”  Nick reassured me that we were doing the right thing by being checked.  We did not call family because we honestly thought I would be back home and I didn’t want to worry them.
                We got to St. Lukes North and were quickly checked in.  It was eerie; very quiet.  I went into the triage room and was greeted by two sweet nurses.  I gave them a urine sample.  They took all my vitals-all came back normal.  They commented how they thought I possibly had a UTI or kidney infection and would take my urine to be analyzed.  One nurse said, “Well before you go let’s check your cervix.”   She checked me, and said very calmly, “You are dialated to a 3/4, 90% effaced.  Things are going to move very quickly.  You are in labor, and we need to stop it.”  I couldn’t believe I was in labor at 30 weeks to the day.  I started crying and was inconsolable.  The nurse and Nick had to calm me down and get my breathing under control.  I remember the nurse saying, “You need to be calm for your baby.”  It was 9:45 PM.  All of the sudden everything was happening so fast.  It seemed like in one breath the nurses were putting  a catheter in me (two attempts to do that-OUCH!), hooking me up to an IV and running a Magnesium drip to stop labor(OUCH!), and giving me a steroid shot to help our baby’s lungs develop (OUCH!) if I ended up delivering that evening.  I thought I was in a dream and I would wake up soon, but it was just the beginning of a very scary reality. 
                I remember being so confused, almost as if I was having an out-of-body experience.  Then they hit me with some scary news.  They told me I would be transported to St. Lukes Downtown on the Plaza because regardless of where I gave birth, our baby would be have to be transported to St. Lukes Plaza’s Neonatal Intensive Care Unit.  Therefore, they wanted to keep mommy and baby together.  They said I would be taken by ambulance and Nick would have to follow by car.  More tears.  I did not understand.  Everything was happening too fast.  I think I was in shock.  Mari got to the hospital in time to greet Nick and follow him and the ambulance to St. Lukes Plaza. 
                There were two men escorting me to the ambulance.  One man, named Don, sat in the back of the ambulance while the other man drove.  Don calmly talked to me the entire drive to St. Lukes Plaza.  He told me how he had been a firefighter for 31 years, and told me several stories of delivering babies in people’s houses and cars.  He told me about his children and grandchildren.  He never stopped telling story after story.  I am so thankful for him. He did an amazing job keeping me calm all the way down there.  When we arrived at St. Lukes Plaza, I remember being wheeled in and we had to wait a bit to be escorted to my room.  I got placed in my bed and Nick and Mari were right behind me. 
                A resident, Dr. Morales, checked my cervix again.  This time I was dialated at a five, 90% effaced.  Yikes.  Dr. Lu came in and talked to Nick and me about what to expect, his plan to stop the labor and to keep our little boy safe.  He covered everything; explaining how things would work once I had the baby, possible risks, the importance of the second steroid shot, explaining how 30 weeks was a pivotal gestational period where babies can be beat the odds.  Dr. Lu was extremely helpful, knowledgeable and sincere.  I was so glad that I was under his care.  Both Dr. Lu and Dr. Morales thought I would deliver that night.
                Christy, a nurse practitioner from the NICU came in and told us what to expect if were were to deliver that evening.  She terrified us.  She was talking about different levels of brain bleeds and different apparatuses our baby potentially could have with oxygen support.  She also explained his lung development.  We were both so scared.
                After all the visits from the different doctors and nurses, things finally began to slow down a bit.  I was stabilized, but the magnesium drip really started to affect me.  It makes you really, really hot and icky.  Our room temperature was set at 65 degrees, and I was still soooo hot.  The mag drip also makes you extremely thirsty.  EXTREMELY thirsty!  I had to be restricted of water and food.   I don’t remember much of anything else that evening.  We all did our best to rest.

Monday, November 21st:
                We had several visitors: Mom, Mari, Aunt Bren, Gabe and Lacey.
That morning I received an ultrasound to see how Jackson was doing.  He was in position, head down.  They determined that he weighed 3lbs. 4 oz.  I got very hot and uncomfortable during this.  I thought I was going to get sick.  I broke out in a sweat.  She had me lay on my side, and I began to feel much better.
That evening at 9:45, I received my second steroid shot. Thank the Lord!  They started to wean me off the Magnesium drip. I received sleeping medicine to help me sleep.  Wow, that’s a crazy drug.  I had extremely weird dreams.  I dreamt about these strange bed sheet characters.  These crazy characters were pressuring me to be dress up in a bed sheet and become a character.  They were dancing all around my room.  Very odd, but at least I slept.

Tuesday, November 22nd:
                In the morning, I was taken completely off the Magnesium drip.  I got to get my catheter out (YEAH!) and used the bedside commode.  That afternoon, I even got to eat lunch.  The best thing-I could drink all the water I wanted!  That evening, I got to eat supper.  I felt great!  Katie, Ella and Mom came to visit.  Randy, Mari and EJ came to visit.  Nick ran to St. Joe to grab some clothes.  I was feeling so great.  Nick and I were beginning to think I would be in the hospital on bed rest for a few weeks.  However, our son had different plans!

Wednesday, November 23rd:
At 1:00 AM, Jackson’s heart rate dropped.  I started to be in pain.  It just continued to get worse and more intense.  They put me on more fluids.  I started to shake and sweat.  It was awful.   Nick was amazing.  He tried to keep me calm and relaxed during the contractions.  He took a washrag and rubbed my back and leg with it over and over and over for several hours. Dr. Morales came and checked me.  I was still dialated to a 5, but he could tell I was going to have the baby soon.  He said there was nothing more they could do to stop the labor.  They ordered me an epidural.  The anesthesiologist came to our room and went over all of the risks and expectations.  I was having horrible contractions back-to-back, no breaks in between.  I was so scared.
They sat me up on the edge of the bed as I was contracting to give me an epidural.  Let me tell you, there is nothing worse than having a contraction and sitting up on the edge of the bed.  Thank goodness, Nick held me tight and so the epidural would go in safely.  Because our baby boy would be a preemie, we had to deliver in the OR.  After my epidural took affect, they wheeled me into the OR at about 5 am.  That room is just like you see on TV.  It is big, bright and white, with a lot of people in it.  The NICU people were at their stations ready to take our baby when he arrived and I had my team of Dr’s and nurses to get me through the delivery. 
I had a wonderful labor coach, Dr. Wickstrom.  I commented to the doctors on how Nick and I hadn’t taken a labor class yet, so I didn’t know what to do.  Dr. Wickstorm told us not to worry that she would give us a crash course.  I remember everything from the labor.  My head was clear and I was very focused and driven.  I can recall every detail.  Our birthing coach made several suggestions to me and I tried several different birthing techniques until we found one that worked.  My contractions were not picking up on the monitor, so I had one nurse push on my stomach and once she felt my uterus contract, she told me to push.  After a while, they gave me potosin so I could feel the contractions so I would know when to push.  I pushed for about 2 hours.  And our sweet little Jackson Lee was born sunnyside up at 7:18 am, just shy of 10 weeks early.  He weighed 3 lbs. 8 oz. and was 18 ½ inches long.  Right when he came out, he took some deep breaths and cried!  I was relieved; his lungs were working!  Nick and I were thrilled!!!  He was so precious!
I told Nick to stay with Jackson and the NICU team while the doctors finished with me.   After Jackson’s birth, I had to go back to the room.  A doctor came and took out the epidural.  They took some more vitals, etc.  Both my mom and Mari had arrived and were anxious to meet their first grandson.  Nick shared Jackson's name with them and took them back to the NICU to see him.  Oh, they were so excited!  Finally, I was wheeled down to the NICU to hold my sweet baby boy for the first time.  I remember him being so small, yet I thought he looked bigger than 3 lbs. 8 oz.  I am a mommy!  My heart is full and I am in so much love with my sweet, sweet Jackson. 
God completely took over during this time.  He reassured me, guided me, reminded me of His love not only for me, but for our son.  As hard as it is to believe it, he loves Jackson even more than I do.  I know Nick and I were meant to be a part of God's purpose and plan for Jackson.  I am so grateful of God's unconditional love during this time. 

Friday, December 2, 2011

Heartburn, detour, Happy Meal

Well after the last two days, today in particular, it looks like Jackson might have reflux problems. Figures that the guy that has never had any medical malfunctions would end up with a son that has one right off the bat. It's probably nothing though. After gloating about his photo therapy being over, who comes up with these terms anyway, his bilirubin* went up again, so his isolette looks like the window of a liquor store again. (because of the neon lights - in case that one worried you)
    *Funny note on bilirubin: after nearly two weeks in the hospital, Jen still calls it bellyrubin. Don't tell her I               said that.

We had a nice quiet day with Jackson. Only one visitor - I'll get to more on that later. Since his light was off for most of the day, we got a lot of holding time with him. Unfortunately, because of the reflux issue, it wasn't as pleasant as most of our holdings. We knew we probably had a big weekend ahead and we were both starting to wear down a little, so we left the hospital early today at 5:30. We thought this meant we would head back to the cozy confines of the "Golden Arch Inn" and call it an early night. We should have known better.

We had to make a pit stop at CVS for some sundries and ended up cruising Troost for a few blocks. We were also greeted at the drug store by three police officers questioning a store employee. For any men reading this, I wouldn't suggest cruising through the ghetto after dark on a Friday night with your hormonal wife. Jenny will vouch for me though, we hit an inconvenient run of intersections with no left turn signs and one way streets going the opposite direction we needed to go. This didn't prolong our early arrival by much but it was worth mentioning.

After we got back to our temporary residence, we managed to find things to do until, well let's see what time it is now, 11:47. So needless to say at this point, our plan to hit the hay early failed.

Back to the visitor we had today. Jenny's friend and co-worker, Ashley brought us a "Happy Meal" courtesy of the staffs at Pathfinder Elementary and Barry School.  Thank you isn't enough, Pathfinder and Barry folks. The generosity that we have received through this situation has been completely overwhelming and continues to humble us. We really don't know what to say. I'm sure at some point we will find the words and will express our gratitude. One thing I can say now is that we cannot wait to be in a position to pay it forward. We have learned a lot about ourselves and the amazing people close to us this past week.

We are blessed and Jackson is blessed. Thank you all so, so much.

Thursday, December 1, 2011

Light is off - clothes are on

This morning got off to a great start. We entered his room and there was a lack of glowing blue light from Jackson's isolette.

Dad picked out his clothes and dressed him.
  •  His bilirubin leveled out and he doesn't need a bug zapper - for now. Not only did this mean improved pictures, but we got to hold him for a total of three hours today; an hour and a half apiece!
  • His picc line was removed last night from his foot, which means no more Total Parental Nutrition (TPN). More importantly, no blue light and no IV meant he got to wear clothes for the first time.
  • The scabs on his nose mysteriously disappeared over night. 
  • His nasal cannula was removed this morning and he seemed to be doing fine without it. 
  • His feedings were increased from 26ml to 30ml, which is the max feeding for his weight. 
  • He is still having some problems filling diapers without assistance (don't ask), but his little gut is looking fine and the staff is not worried about it. 
  • McDad got to eat Gates ribs tonight! Thanks Gabe and Lacey!
    Mommy got to feed him some milk on his birthday. We said it was his birthday cake, which he promptly spit up. Bonus was he got a milk bath!
    G-Ma Owen was happy to see Jacks on his one week B-Day. We'll try to get some video of her up for your entertainment: a lot of ooo's, ahh's and heeheehee's.

    Giddyup!

    She made a lot of funny faces at him and he loved it.
    McMama time!
    Aunt Kate's little pilgrim. Sorry it's so late Kate.
    Grandma Mary (a.k.a. Baba) and Grandma Mari (yet to be nicknamed by Jackson) were there at the same time today. Jackson loves his grandmas.