Tuesday, January 31, 2012

Roller Coaster of Love

Lennon was up to 3lbs yesterday, but lost 2 ounces of that today so she is 2lbs 14oz right now.  The nurse said that it was probably just a poop she was holding on to.  I love our nurse this week.  Her name is Kim and she is hysterical.  She is an over-sharer and makes me laugh a lot.  She is definitely a mother and grandmother, so she likes to take care of others.
Lennon no longer is on the oxygen or the nasal cannula.  She is doing very well off of it.  There have been 1-2 "incidents" of de-sats, but it tends to happen at the start of her feedings.  Could be as simple as her system adjusting to the food coming in.  Kim told us that Lennon will not come home until she goes 5 days without a de-sat.  Which is comforting and frustrating all at the same time...  The doctor yesterday said that we are looking at about 3 more weeks before she will get to come home, but that could change either way since Lennon is a feisty thing.
Nurse Kim has been letting Lennon nurse for a bit before starting her g-tube.  It has been nice since Lennon is hungry and nursing more.  I asked Kim when the bottles will start and she said to talk to our nurse tomorrow and see if they can start them ASAP.  Kim feels that Lennon would do well given the fact that she is sucking on her pacifier like a champ and nursing well for her gestational age.  Even if she starts at just 2mL it will still be a start and Collin will get to participate in the feedings a bit more.  It meant so much to him when he got to help with Van's bottles, so I can only imagine how he will feel about Lennon's.
Van is sick with a cold.  He has been running a temperature for the last couple of days, complaining of ear pain yesterday, and started a sore throat today.  I just keep pumping him full of tylenol and Motrin to keep the fever down and that seems to help with the sore throat too.  It was up to 102.2 this evening (before I gave the Motrin).  Poor thing is pitiful!  hopefully he will start feeling better tomorrow.  I asked the nurse if I would need to stay away from Lennon, but she said that I should be fine as long as I am not showing symptoms.  I worry more since Van has a respiratory thing going on... this can be so dangerous for a little thing like Lennon.  I may stay away tomorrow just to be on the safe side.  Still haven't made up my mind there.

On a different note, I have decided that I am not made to be a stay-at-home-mom!  I have spent the last 2 days cleaning and cooking... this is not for me.  I love the cooking part, but could definitely do without the cleaning part.  I could stay home if I just had a maid!!  Props to those ladies who stay at home with the kids.  That really takes a level of patience that I just don't have in me.

Saturday, January 28, 2012

Moving on Up

So much good stuff going on for the past few days!!

Lennon is now up to 2lbs 13oz and is back to room air at a high flow.  The nurses just let Lennon take the lead on determining how much oxygen/flow she needs.  The doctors think she is just young and needs a little more time to keep her oxygen up on her own.  
Now that Van is in daycare again, I typically go to Lennon's 11:30AM feeding time.  Makes it easy on everyone:  Collin can sleep, Van is at daycare, and I can focus solely on Lennon until I have to go pick Van up at 1:00.  Yesterday, I missed the 11:30 so I went to the 2:30.  The nurse let me know that Lennon woke up and was gnawing her hands at the 11:30 feeding.  While I felt a bit guilty for missing that, it let's us know that she is starting to recognize when it is time to eat!!  The nurse was as excited as I was!  
So I went in this morning and she was asleep, but as soon as I pulled her out of her isolate, her eyes popped open.  Lennon was great at latching on more frequently and for longer periods of time.  

We changed Lennon into clean clothes.  We put her in her little hawaiian shirt that her Aunt Karen got her.  She is so cute!  I swear she looks like a pretty little baby doll :-)

Around the house, Collin and Nana got the carpet ripped up and new flooring laid in our room.  It looks amazing!  We now have no carpet in the house!!  It is really nice to know I will never have to vacuum again in this house :-)  Nana, Van, and I went out today and picked up a new comforter for our bed.  It is like a brand new room.  I love it! 

Nana and I put the crib together today.  Lennon's room only needs a rug in there and of course, Lennon and we are done :-)

I will post pics soon hopefully.  

Overall, it has been a great couple of days:  Lennon is doing so well, Van has been in a great mood, and our house is finally coming together!

Wednesday, January 25, 2012

The Other Side

Today has been a LOOOONG day!  It started with taking Collin to the ER.  Collin has had a sore throat for a few days.  Last night he hosted karaoke, which takes a lot out of his voice.   His sore throat was so bad he could not talk or swallow.  We got to the hospital at 7:15AM and did not leave until almost 12PM.  Wake Med (big Wake) took 4.5 hours to get him taken care of and that was only because his mother found the nurse to finish him up.  The doctor gave Collin an IV of morphine and an anti-inflammatory med.  Then, they gave him percoset to take home.  Now, I am not a doctor, but do these drugs seem a bit overkill to anyone else?!  Our guess is that there are a LOT of drug addicts that go to Wake Med.  Not to worry... Collin was feeling much better after meds and some rest.  He has not been running a fever, so I doubt he is contagious.  


I went to see Lennon by myself.  She was still at 2lbs 10oz and wearing her cute little pink dress.  Lennon is on Lasix, so her weight will probably remain the same or drop a little over the next couple of days.  I was hoping for a little 1:1 time, but that was not exactly in the cards today.  Apparently, some of the specialists had been trying to track me down.  Nothing bad, but they wanted to check in with me. 


First, the physical therapist came in to talk to me.  We reviewed again how Lennon is preemie and tiny and is going to have to learn some things that she should have learned in the last 10 weeks.  Yes, I know it is her job and she means well, but I am so sick of hearing every professional telling me what she should have already learned before she came into the world.  It is not like we planned on an early arrival.  It is tough being on the other side of the table of these developmental professionals.  I find myself just wanting to yell, "Yes!  I know.  Can we just skip the child development class and move on to what I should do to help her in here to move forward?!"
Then, she kept going on and on about the value in using the early intervention (EI) services.   I don't know how many times I have heard that this doesn't mean there is an issue; only that Lennon is automatically eligible because she was born before 35 weeks.  I know what EI/CDSA does to help catch kids up and catch any issues early.  This is not a foreign service to me since I work in the Developmental Disabilities field.  I don't need to hear the virtues of accepting the services.  I want to use them!  Being able to use them right now would mean Lennon was home with us!  It just irritates me to try to convince me to use a service when I am fully willing to use it, but can't.  I am not the kind of parent that needs convincing.  
The PT did give some good information, but it wasn't anything that I can really do while Lennon is in the hospital.  Which is really frustrating as a parent.  


Then, the lactation consultant came in to chat.  She is only person that never seems to have "bad" news to share; only positive.  She talks about how cute Lennon is and how great she is doing with trying to nurse.  She really loves her job and is so sweet.  It is nice to have someone to focus only on what is going well.  She actually said that Lennon is well ahead of the curve in this area!


The nurse was completely wonderful today.  She could tell I was frustrated and getting upset (probably since I had cried at the PT and LC).  I asked her if there was any clue as to when Lennon could go home.  She explained that once Lennon reaches 3lbs (only 6 more oz!!), she will move to an open crib.  After that, we will start bottle feeds; 1-2/day.  The nurse said that the bottles will start slowly, but after a couple of days Lennon will "get it" and take off.  Once she is taking all milk via bottle/breast, she will be ready to head home!  It should be between 35-37 weeks gestational age (we are at 33.5 weeks as of today).  The nurse also said that I am going through what they refer to as "NICU-itis" and it would probably get worse as we get closer to going home... great!  


Hopefully, tomorrow will be a little easier for all of us!  Today has just been exhausting!!

Monday, January 23, 2012

Pictures

Thought I would share some photos from the first days after Lennon was born.  You can see just how far she has come in the last couple of weeks!


Under the lights to take care of the Jaundice.  

First time meeting Nana. 

That pacifier is actually tiny! 

First little sunglasses! 

Daddy's ring could be her first cuff bracelet :-)

Alice's Restaurant

Lennon was one hungry caterpillar over the last couple of days,  Lennon has gone up from 2lbs 7oz to 2lbs 10oz!!  She also went from 14.5 inches at birth to 16 inches :-)  Little peanut is getting bigger every day!!


The FNP called this evening and gave us some good news.  Lennon is still requiring oxygen, so the doctor ordered a echocardiogram.  It was more to rule out the idea that there was a heart condition causing the need for oxygen.  The FNP said there was nothing abnormal found!!  Whew!  There is a valve that is not closing completely, but that is normal for many full term babies and it typically self corrects.  Van actually had this when he was born, but it closed on its own by the time he was 2 weeks old.  

The doctor did order a round of lasix.  This is a water pill and will help get rid of any fluid that may be in Lennon's lungs.  This could be the cause of Lennon needing some oxygen, but they aren't 100% sure.  Hopefully, it will help so we can get her off the oxygen completely!

Sunday, January 22, 2012

Stronger

Just a quick update on Lennon and us for today...


Not much has changed for Lennon or us (Thank goodness!!).  Lennon has been at 2 lbs 7 oz for about 3 days now.  Temps have been good, so no need for additional monitoring there :-)  Today, they started adding fortifying powder to her milk.  Breast milk has 20 cals, but with the fortifier, it is upped to 24 cals. When she comes home, she will be taking a fortifier to make it 22 cals.  This way they can up her calories without upping the volume she is eating.  


Lennon has tried to BF a couple more times.  She is doing great with it and works so hard at it.  She will normally try for about 10-15 minutes, then pass out for the rest of her g-tube feeding.  


Lennon is still taking 24% oxygen (21% is room air) for the time being.  The nurse today said that they hadn't really tried to ween her off today.  Maybe tomorrow??


Van gets to go back to his babysitter's tomorrow morning.  He really needs some normalcy back in his life.  I am sure he misses Miss Stacey and Ian too.  He needs to be around his friends; if nothing else to get him off the computer, lol!


Collin is nursing his wounds after the 49ers' loss, but I think he will survive.  


I think that is about it for today.  It is amazing how much you learn to appreciate the quiet days!!

Thursday, January 19, 2012

RESPECT

Let me start by saying that Lennon and I have had some of the very best medical care and nurses that I could ever have asked for.  Labor and Delivery nurses are amazing!  They were so supportive through all of the changes.  They dried my tears, calmed me down when I was scared, assured Collin and me at various times, and encouraged us through it all.  My nurses after the c-section were sweet as could be.  When I was crying as I was getting ready to be discharged, the nurse came in and hugged me and asked me to come by and keep her posted.  


Lennon's nurses have been super caring and you can tell they love their babies and their jobs. The FNP has been one of my favorite supports in the Special Care Nursery.  She is the person who came to discuss the risks prior to the c/s and has been wonderful at keeping us posted.  I cannot believe the love and care that each nurse has shown my child.


The biggest pet peeve I have as a parent of a child in the special care nursery is a nurse/caregiver with no bedside manner.  The other night, I was there with my mother-in-law.  We got there at 5:30 for the feeding.  Shift change is at 6:30, so we only had an hour.  The nurse in charge of Lennon's care was typing something and taking her time.  No big deal; I know it can be easy to forget what you were doing if you step away from something, so I didn't think about it.  No personality, but you don't have to be a great conversationalist to take care of babies.  
At 6:35 another nurse came in and informed us that we would have to leave.  We already knew that, but again, whatever...  This nurse kept referring to Lennon as "he."  I let it slide the first time thinking she would see the pink blanket and hat and correct herself.  I was wrong.  Here is how the rest of the conversation went from there:
Nurse:  He is doing great
Nana:  He is a She
Nurse: Oh, well, we get used to saying one thing or the other


The rest of the conversation the nurse continued to say he.  It almost felt as though she was making a point to say he instead of she.  This irked me in so many ways.  It is not that hard to adjust from he to she.  Between the pink hat, pink blanket, the medical chart, and being corrected, you should be able to note that it is a little girl.  If you cannot, then I seriously doubt you are detail oriented enough to care for my child!  


My point is:  Parents of preemies are under enough stress and worry.  I am trusting a nurse, a stranger, to care for my baby 24 hours a day.  Please put forth a little effort to illicit trust from the parents.  Just calling my baby by her name can make all the difference in the world.  

Hungry Eyes

The last few days have been a whirlwind of good news!!  

For the last few days, the doctors have been steadily increasing Lennon's milk intake by 3 ml/ day.  She is maxed out at 21 ml per day.  That is a tiny amount, but to Lennon's tiny little tummy, it is like eating Thanksgiving dinner 8 times a day.  


Lennon no longer has an IV, so she is able to wear clothes.  She looks so cute in her little nightgown!  We are washing her clothes to get them ready for her.  Can't wait to see her in her cute little dresses :)


**Boys beware... this next part is about breastfeeding!**
Yesterday, we tried "lick and learn." (Get your mind out of the gutter!!)  It is a way for Lennon to familiarize herself with the breast in hopes of learning to breast feed.  Lennon did great!  She has been rooting for a few days, but I never would have guessed that she would be so quick to catch on.  She immediately started trying to latch on, but let's be honest...she has a tiny mouth.  Latching on may not happen for quite a while.  She did taste some of the milk, but was not quite sure what to do with it.  We tried for about 10-15 minutes.  We stopped because Lennon was focusing on eating and was forgetting to breathe.  This is not abnormal since the suck, swallow, and breathe process is hard to coordinate.  

Today, we went to see Lennon for her 2:30 feeding and she was back on the nasal candula to help with her oxygen intake.  The doctor said her desats could be for a couple of reasons:  acid reflux or due to filling her belly so full during each feeding.  They are ruling out the idea of infection, but we won't know for sure until tomorrow.  They did a blood panel the other day because Lennon was having trouble keeping her temp up.  The blood panel was completely normal.  The doctor does not think that it is an infection, but she wants to rule it out to be on the safe side.  

We just take it day by day... but she continues to make great progress and we are getting closer to coming home!!

Sunday, January 15, 2012

Baby's Got Sauce

Yesterday was a tough day.  I did not get a chance to go over to be with Lennon.  I had planned to go to the afternoon feeding, but unfortunately I had overdone it all day long and managed to damage my incision a bit.  Around 2pm I felt pulling and tugging around the incision.  I called my OB to find out what to do about it.  Just a little first aid and all was better.  I just had to relax fora few hours to get myself back on track.  Me getting sick does nothing to help Lennon.  


Lennon got her PICC line today.  She no longer has a line directly into her belly button.  The line was inserted at birth to allow for a more direct route for fluids and meds.  Basically, the umbilical cord provides nutrition.  When a baby is born so prematurely, the doctors can use the umbilical cord to gain access and provide the same support for about a week after birth.  After that, they have to use a PICC line to prevent infections.  Very rarely will a baby go home with a PICC line.  


Today, I went to visit Lennon.  She was doing great!  She did go back under the lights to help the jaundice yesterday, but she looks so much better today.  She may still have to go have to go back under, but the more she eats, the more she pees/poops, the less she will need help with that.  So far that is not a problem either!  She has been upped to 12ml/feeding (every 3 hours).  From now on, she will be increasing 3ml/feeding every 24 hours.  This means we are one step closer to not needing the IV for additional fluids!  


When the nurse put Lennon to me today, she was pretty awake.  She snuggled right up to me.  She started to root around for a bit on my chest.  This is a huge step towards being able to nurse.  Lennon got a little frustrated and actually raised her head up off my chest and looked up at me at one point.  It was an amazing sight to see her strength!  Lennon snuggled in with me and slept for the hour while she was eating.  It is the most calming feeling in the world to sit with her.  I doze off a lot when sitting there in kangaroo care.  She was able to hold her temperature with no problem while I held her.  Again, this is definite progress :-)  





Emotionally, this was a much better day.  Seeing all of the progress and how much better Lennon looked after 24 hours, was soothing to the soul as her mother.  It is so hard to go back and forth to her and only see her in one hour blocks.  It is enough to drive anyone crazy.    I just want to be able to be with her.  I loathe having to ask permission to hold her.  She is my baby and I should be able to hold her when I want.  However, my logical brain understands that I have to trust the nurses to watch out for her well being.  She needs their protection and care.  I cannot be selfish in this situation, but goodness... I want to be sometimes.  

Saturday, January 14, 2012

Just Breathe



Before Lennon was born, there was a lot of talk about her lung function.  I only had one shot of the steroids for Lennon's lungs and being that she was only 30+5 gestational weeks, she could go a variety of directions.
The Nurse Practitioner (NP) came in from the Special Care nursery to talk to me about some of the big dangers of delivering at 30 weeks.  She was very honest and realistic about the risks, but at no point did she scare us.  She was able to talk openly with us and I so appreciate that.  I did not want or need a sugar-coated version of the possibilities.  The NP gave 3 scenarios: Intubation, b-PAP, or Nasal candela.  The nurse said she suspected that the b-pap would be the most likely scenario, but until the baby is here, there is no way to know.


When Lennon was born, she was immediately intubated to help her breathe.  This was actually a very good thing.  With the intubation, Lennon was able to get an extra dose of medicine applied directly to her lungs.  While it is a scary scenario and can be terrifying to look at, it was the best thing to happen for Lennon's sake!  I am somewhat relieved that I did not get a chance to see Lennon intubated.  Everything in my logical brain says that is what she needed; everything in my soul says that intubation is bad, scary, and way too closely related to death.  Not what I needed to see!


Within 24 hours, Lennon had graduated from the intubation to the bipap machine.  If you know someone with sleep apnea, you will have some sort of idea of what the bipap machine does.  The machine just helps force air into the lungs.  Lennon just needed help getting the air in, but did not need increased oxygen, which is great!  Lennon responded great with this as evident of her oxygen levels, but she did not like it physically.  She would grab ahold of the face mask and pull it as hard as she could.  It reminds me of my mom fighting with her sleep apnea machine, lol.  


After being on bipap for less than 24 hours, Lennon moved off of the bipap and was on put on a nasal candela.  This is a little less scary.  This is just the little nose prongs that go across your face.  She was on this for just a little while and they took her off.  She has not needed extra oxygen, just a little help to remember to breathe.  




We are at one week today... Lennon has only moved forward with her breathing!  She is now off of all oxygen support.  She is breathing room air and is on caffeine to help stimulate the part of the part of the brain that helps remember when to breathe.  Her brain is still developing at warp speed, so it is only a matter of time before she doesn't need the caffeine anymore.


I have the strongest little girl ever!  I have a feeling those little lungs are going to be very loud very soon.  A sound that I welcome into our house!!  



Thursday, January 12, 2012

From GERD to Preemie

First, let me start by apologizing for the sheer length of this post.  Future posts will not be nearly as long, I hope!
To say this has been a hectic and unplanned week would be a huge understatement!  I know a lot of people were just learning I was pregnant, so to learn the baby was born was kind of a surprise.  So I guess I should fill people in on what the heck happened!
I started the week as I always do on a billing week... separating paperwork, tracking staff down, etc.  I had some upper abdominal pain, which is so normal in pregnancy due to gas that I did not think much of it.  Around lunch, the pain was bad enough that I could not pay attention.  I got a co-worker to cover a couple of things for me and I went to the doctor (after MUCH persistence from Collin).  The doctor thought the pain was from GERD (Gastro-Esophogeal Reflux Disease).  This is very normal for pregnancy since your stomach is squished up from the baby.  I was told to get some Zantac and take it daily regardless of how I felt to prevent future irritation.  I went home to my ever-loving, supportive husband and told him what the doctor told me.  From there on out, I was called "GERD-y"

Wednesday and Thursday were fairly normal days.  I worked, took care of my son, cooked, cleaned, etc:  VERY normal days.

Friday - 1AM - I woke up with terrible pain in my upper abdomen again.  This time, it was so bad, I could not get comfortable.  Collin came home and insisted that I call the emergency line for the OB/GYN.  I called at 3:30AM.  I did not hear anything from the doctor, so I tried taking Maalox, threw that up, and took a shower.  The only thing that helped was a hot shower.  Finally, Dr. Littleton called me back and told me to try liquid Maalox, but to get into the office for an appointment as soon as they opened at 8AM.  I did as I was told, but there was not an appointment until 11:40.


I went to my appointment and they ran several tests: urine, blood panel, etc.  I saw Dr. Scott, who I like and trust.  He is new to the practice and really is great!  He scheduled an ultrasound because he thought that my gall bladder was inflamed.  He also suggested that I try using a stronger antacid.  


Collin and I left the appointment, got lunch, then went home to nap.  I slept for what felt like just a few minutes, but was actually closer to 3 hours.  Dr. Scott called and to be honest, I don't really remember much of what he said.  I remember him telling me that the blood results were not good and that I needed to get to the hospital.  I do remember him saying to pack to be there for a while.  I don't remember much... it really was a whirlwind from there.  I didn't know what to ask, what to take with me, what to plan for.  Collin and I were terrified for the baby.  


Once we got there, Dr. Scott met us in Labor and Delivery and explained that they were not sure what was going on with my blood panels, but that my liver enzymes were elevated and my platelets were very low.  Along with the upper abdominal pain, it pointed to HELLP Syndrome (a version of pre-eclampsia).  The problem was that I was not meeting all of the criteria for it.  I did not have the high blood pressure that would typically accompany HELLP.  I also was not having a headache, yet... that came very soon afterwards though.  Dr. Scott was amazing.  He worked with UNC to figure out a game plan.  The doctors gave me steroids to mature the baby's lungs and talked to me about the possibility of taking the baby early.  Because I was not showing all of the signs of HELLP, they still wanted to rule out a GI issue, which was done through an ultrasound.  The decision of when to take the baby was not an easy one to make.  If they waited too long, then my platelets would be so low that I would probably have difficulty clotting after surgery.  This means I could have bled out on the table as they were taking the baby, but taking the baby without getting the steroids in could mean the baby's lungs were not developed enough, so she would be in major danger.


Saturday was pretty much a blur as well.  I developed a headache... this quickly turned into what I just thought was a migraine.  I spent the majority of the day with ice packs over my eyes and around my neck to relieve the pain.  I later found out this is part of HELLP and is a sign of the decline of my health.  I was placed on Mag to prevent seizures, which could happen with HELLP.  Throughout all of this, the baby's vitals remained perfect, so there was little reason to rush to a c-section.  The plan was to get a second dose of steroids in and 24 hours later, deliver the baby.  This would have put delivery at Sunday after 8PM.  Every minute allowed to stay in utero was a minute in the baby's favor.  


I spoke with Neonatology and anaesthesiology Saturday evening.  I asked every question I could think of.  So many fears went through my mind:  What is the survival rate for a 30 week old preemie?  What are some risks (e.g. blindness, Developmental delays, etc)?  What will the baby look like?  How long will the baby be in NICU?  Is Rex the best place or should we look at going to Duke or UNC?  How much will the baby weigh?  (PS - They thought the baby would be 3.5 - 4 lbs).


The anaesthsiologist spoke with me about the way this c-section would be different from when Van was born.  I was going to have to be put completely under because I may have trouble due to my low platelets.  This would mean Collin was unable to come into the OR with me.  I would have to be alone.  Because of how fast the process would have to go, there was a slight possibility of feeling some of the surgery, but it was unlikely.  The prospect was terrifying.  This was the kindest doctor that I have ever spoken with.  He was supportive in such a grandfatherly way.  I wish I could remember his name.  I want to give him a hug and thank him for his genuine kindness and care.


Later Saturday evening, Dr. Gausman (fill in OB from Capitol OB/GYN) came to talk with me. She had been working with Dr. Scott and UNC to determine the best course of action.  The team decided that the best solution for all involved was to give the second set of steroids and only wait 12 hours before the c-section.  She also said that she would give me morphine with fenegrin to help with the headache and nausea.  


As soon as the morphine/fenegrine IV was given, the fun really began.  Collin will have to write an entry for most of this situation... I was out for most of it, so I think he will be the most reliable resource.  I remember them giving the meds, Collin laughing with the nurse because I am super-sensitive to sudafed, throwing a pillow, and eventually trying to tear off my gown.  I knew this was not a normal/ok response, but I could not stop it.  I remember hearing a lot of hustle around me, the lights in the hall when they wheeled me out, and getting to the OR.  The anaesthesiologist was there.  He was the only person in the OR that spoke to me.  I don't think anyone else could tell I was awake at all.  He told me everything he was doing and kept telling me not to worry.  Like I said, I want to hug him!  I heard him ask if everyone was ready, Dr. Gausman said she had her scalpel in her hand, and then it went black.  I woke up in recovery what felt like a second later; asking if someone had spoke with Collin and if the baby was ok.  


To be honest, I don't know when they told me I had a little girl.  I don't remember who told me, how they told me, or even my reaction.  I was so relieved to know the baby was ok, even at 2lbs 6 oz and 14.25 in.  I was told later that my uterus was significantly smaller than they expected which explains why Lennon Jaymes was a pound smaller than they predicted.  


So this is the story of how Lennon Jaymes came into the world.  She is a strong-willed, fighter.  Funny... I thought after Van's emergency c-section, it would be easier the second time around since we were scheduling it out.  Leave it to a Huntsinger/Yarbrough girl to do things her way!