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TAPVR UPDATE

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i called our previous cardiologist that we loved back in az. dr. stock and asked him for a recommendation for a cardiologist here in seattle. he gave me the name of one he highly recommended and actually did rotations with when they were in school together. it’s a scary thing leaving a doctor you love and who knows everything about your baby. dr. stock was the first cardiologist we talked to once we got the diagnosis. he sat down and drew a picture for me of jacks heart and a healthy heart. he explained every detail of jacks surgery. he answered all my questions. we formed a bond and felt nervous moving on to a new doctor and new hospital. we thought about keeping dr. stock and making the trip back to az for check ups. we were still watching his asd and weren’t sure if it would need to be closed or close on its own. needless to say we knew we needed a doctor close to home if he did need another surgery we wanted it to be with a doctor we established care with and in a hospital here where we could be together as a family. not thousands of miles away.

we went to jacks appointment nervous. hoping his asd closed on its own but preparing that if it hadn’t this would be the time they would make the decision to close it. he did so great sitting through his ekg and ultra sound. it felt like it was dragging on forever. i laid next to him and sang songs, fed him snack and watched tv. waiting for the doctor to come in feels like torture. we met the doctor and he told us his asd closed!!! no surgery. the biggest relief ever. we go back in a year for another checkup. he’s cleared to be as active as he wants and has no restrictions. this miracle baby is one tough guy.

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GIVE LIFE -BLOOD DONATION

this past week i’ve had that nagging feeling i needed to donate blood. you are able to donate every 8 weeks and right when i hit my eight week mark i start getting the calls. asking me if i can donate again. then the emails. i had three emails in my inbox in the last week alone all with donation spots close to my home. somehow the days flew by and i hadn’t made it to donate. last night was another chance to donate. i had promised henri a date night and by the time we got home it was 7:40 and i had forgotten all about it. i sat down and checked my email, there it was in my in box. united blood services taking donations at my church building until 8pm. i grabbed ava and said lets go.

ava has never gone with me to donate blood. she knows i do it. she is scared to death of shots and needles. i have to admit i was the same way when i was little and up until i had my first baby i would freak out at the sight of a needle. i didn’t sign up ahead of time so it took a little longer than normal. we had to go through all the questions. they were so kind to her down there. she got to eat as many snacks as she wanted and they talked to her about the importance of donating blood. the phlebotomist explained that every bag we donate saves 3 lives, that they separate the blood into platelets + plasma + blood. each are used for different traumas. she also said they need 700 donations a day to keep up their supply and get nowhere near that. so they are always in a deficit.

ava was so loving. she held my hand and rubbed my arm (the one that wasn’t having blood taken) it was sweet to see her being the brave one. telling me it was ok. usually i’m consoling her at the doctors office. i could tell she was nervous for me and she didn’t want me to feel nervous. i assured her i was fine and i am happy to donate blood. my veins are huge and i fill a bag quick. i don’t have side effects. i’m ready to go the minute i’m done. how can i not donate. there was a young boy donating next to me. maybe 17 or 18. i wanted to hug him. i wanted to tell him how awesome he is. donating blood out of the goodness of his heart on a tuesday night on his summer vacation. he could be out with friends, at a movie. but he chose to be here doing this. his mom must be proud.

jack had two blood transfusions when he was in the hospital. one the night before we found out he had TAPVR. i remember the nurse waking me up in the middle of the night and saying they would have to transfuse him. i was so out of it. it felt like the first time i had sleep in 5 days. i said ok and dozed right back off. she woke me up again and said i need you to sign for the blood transfusion. shocked i said “BLOOD TRANFUSION???” what?! no!! i said i guess i didn’t understand what you were saying. they did so many tests and X-rays. it was all blurring together. i thought it was just another test. she brought the doctor in and he explained jacks body was shutting down. he was no longer making new blood. i was raised jehovahs witness. (i no longer am) we were not allowed to be given another persons blood. i remember every field trip permission slip my mom would write -do not give blood for any reason. all over it, in capital letters and underlined. it was ingrained in me that we don’t take anyones blood. for anything. so being faced with this decision was very difficult. ivan and i talked about it. the doctor explained this was his only option. i cried. he was given his first transfusion. a tiny bag of donors blood. i called my sister the next day. i told her how i was worried about telling my mom. she is no longer jehovahs witness either. we’ve never talked in depth about it but i know she would have done the same thing. when faced with the decision, you do whats best for your baby. he was given his second transfusion during open heart surgery. i am forever grateful to those donors that saved jacks life. i often think about who they are. i look around when i’m donating and think it could have been one of these people. i wonder whose life i’m saving. a baby like mine. someone with cancer, a mother a father.

life is precious. life in unpredictable. you never know if that could be you or one of you family members in need of a transfusion. having that blood available is so important. i hope to encourage anyone who is able to give to do so. it is one of the greatest gifts you can give. if not the greatest. to save a life is invaluable. its quick, virtually painless and usually very convenient. united blood services  set up all over the valley. get on their email list and they will let you know when they are in your area. thank you to all that donate. you are a hero. you have touched my life and saved jacks.

Go here to donate https://www.bloodhero.com

 

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TAPVR UPDATE

 

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if you know us or have read our other blog then you know our youngest son was born with infra cardiac TAPVR.  its a congenital heart defect that if untreated is deadly.  there is no chance of survival without open heart surgery.  i wanted to talk about CHD (congenital heart defects) today because it is so near to my heart.

– congenital heart defects are americas and every other countries #1 birth defect.

– nearly 1 in every 100 babies is born with a CHD.

– CHD is the #1 cause of infant death in the united states.

– there is no known cause of CHD.

these are just some of the statistics relating to CHD.  no one knows why my baby was born with TAPVR.  we didn’t even know he had it until he was 2 weeks old.  i had a normal pregnancy + delivery.  i delivered jack in the hospital and brought him home 24hrs after delivery.  at a week old i noticed his bowels slowing down and he started spitting up.  i knew in my gut something was wrong. you can read more about that gut feeling and jacks recovery from TAPVR here.  we found out that he needed open heart surgery at 2 weeks old.  i was the most scared and at peace i’ve every felt in my life.

i remember talking to my pediatrician right after we found out he needed surgery, they were getting him ready to be flown over to the hospital where he would have surgery, and i asked her is this bad?  is this really bad?  she said as far as heart defects go this one is very serious but its fixable.  your only hope for survival is surgery.  it hit me not at heart defects are fixable.  there are moms who lose their babies to this. before jack i didn’t personally know anyone with a heart defect.  i really didn’t know much about heart defects at all.

i tell every mom to please pay attention to your baby’s pulse ox test.  its that little red light they wrap around your baby’s toe.  ask what your baby’s pulse ox number is.  they get an immediate answer right after they wrap the light.  it should be very close to 100.  if its not ask to have them re-tested.  jacks initial test registered at 85, cardiac failure.  had i known this i would have asked questions.  i had no idea what that light tested for so i didn’t ask the questions i should have.

jack opened us to a world we knew nothing about.  he also opened us up to a life of heartache + recovery + love + true happiness.  we live every day to the fullest.  we know what it feels like to watch someone slowly die, to not know if you are going to have another 5 minutes with them.  this doesn’t mean i don’t get frustrated or have bad days.  this means i have more patience.  i have less regret.  i tell my family i love them.  i tell people i appreciate them.  i surround myself with positive + happy people.  there’s no time to waste.  be happy now.  life is full of trials.  you weather the storm + you come out a better person.  the trials are real and they are hard but they are here to teach us, to help us grow.  if you asked me a year and a half ago if i was grateful for the trial’s with jack i would’ve have said no.  today i can truly say i’m happy with the mother/wife/friend i’ve become.  i love deeper and am more honest in the things i want for my life and my family.  jack has taught me more than i could have ever learned on my own.

jacks second birthday is april 15th.  a day which at one point i thought he’d never see.  instead of presents for jacks birthday we ask our friends and family to make a donation or drop off a gift to be delivered to Phoenix Children’s Hospital.  a place that we called home along with so many other families.

 

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What to ask at your ultrasound, other than the gender

TAPVR

Congenital Heart Defects are the most common types of birth defects.  There are approximately 35 different kinds.  1 in 100 babies are born with a heart defect each year in the U.S.  CHD is the leading cause of infant deaths in the United States.  In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood caner combined, yet funding of pediatric cancer research is five times higher than funding for CHD.  There is no known reason to why babies are born with CHD some are genetic many aren’t.  My sons TAPVR is not genetic.  Although you may not be able to  prevent your baby from being born with a heart defect here are a few questions you should ask at your ultrasound.

Do you see four chambers in the baby’s heart?

Are there two upper chambers (left and right atria), each with a valve controlling blood flow out of them?

Are there two lower chambers (left and right ventricles), each with a valve controlling blood flow out of them?

Are the heart and stomach in correct positions?

Is the heart rate normal, between 120-180 beats per minute?

Do the two vessels leaving the heart (aorta and pulmonary artery) cross each other as they exit?

Is the wall between the two lower chambers intact, without any holes?

Does everything else in the heart look normal?

Some heart defects cannot be seen on an ultrasound.  Like my Jack’s.  TAPVR has to deal with the veins and how they attach to the heart.  Veins are so tiny and we are born with more than we actually use therefor they cant see the blood flow on an ultrasound.  Most states (unfortunately not all) require a pulse oximetry test to be given right after birth.  Ask what your babys pulse ox came back at, it should be 100, or close to it.  It will tell you if your baby is getting enough oxygen.  This test is life saving.  My son failed and they sent him home anyways.  If I had known he failed, his strange breathing would have been even more alarming and when the nurse told me babies breathe weird I would have asked for the doctor to look at him again.  Here is a list of thing to ask and watch for after birth.

What is my child’s pulse ox?

Does my baby have a heart murmur?
-A heart murmur can mean nothing or can be a sign of something more serious.  Jack was born with a heart murmur, which I didn’t know about until after surgery.  All babies born with TAPVR have a heart murmur (hole between the left and right chamber) this is the only thing that keeps them alive and blood trickling to both sides of the heart.

How is your babys coloring?  Do they appear blue? (called cyanosis)

How is your babys breathing?  Jack did not look labored, his chest wasn’t tugging.  He seemed to snort while eating and when I burped him his body moved up and down.

Is your baby lethargic?

Has your baby had a change in eating or bowel movements?
– This was the biggest thing I noticed in Jack.  His bowels slowed way down and he started vomiting. Not projectile vomiting so I wasn’t alarmed immediately, it changed to bile and I knew something was wrong.  His internal organs were shutting down and he was no longer able to digest.

Did you know you’re child could be born with a form of CHD and you could not know until they were a teenager or even adult?  People are able to live years with some forms of TAPVR and have no symptoms (Jack has Infracardiac and could not live without his life saving open heart surgery).  You are your childs advocate.  If something doesn’t seem right or is worrying you, have them checked out.  Everyone told me they thought Jack was fine and that lots of babies threw up but I knew something wasn’t right.

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Cardiologist TAPVR 8 month check up

We just had Jacks 8 month cardiologist appointment.  I get so nervous for these appointments.  I worry about what they will see in his echo.  Will he need another surgery?  Will the pressures in his heart be where they should?  Is his confluence growing?  All these thoughts and emotions run through me the week before.  Jack still has a hole between his right and left chambers.  All babies born with TAPVR have it.  Its the only thing that keeps them alive.  Normally they close it when they are reattaching the veins to the heart.  Jacks couldn’t be closed because the pressure in his heart was too high from him being undiagnosed for 2 weeks.  His cardiologist said we’d watch it and best case scenario its closes on its own, worst case he has a catheter procedure and they go in and close it when he’s a few years old.  We also watch to see how his confluence is growing, where they attached the veins.  Its scar tissue so it can be unpredictable.  Ideally it will grow with his body and get bigger as he does.  If it doesn’t grow then they would have to go back in and do another open heart surgery and make it bigger.  So I worry, I can’t imagine him going through all of that again.  At his four month cardiologist appointment everything looked good but still unchanged from his 2 month.  I have to be honest I was a little discouraged.  I get sad that they couldn’t close the hole initially.  I just want this all behind him.

We always start with an echo.  The best advice I can give any parent when taking your child in for an echo is be prepared.  It can take an hour and babies hate laying flat for that long.  I pumped milk, brought toys and had his favorite music.  The other option is a sedated echo and no parent wants to do that.  Of course they can’t tell you what they see on the echo so we head into the room and wait for the doctor.  Our doctor was at lunch so we had to wait an hour in between the echo and actually seeing the doctor.  Pure torture I tell you.  The doctor came in and looked over Jack.  He always tells me he can’t believe how bad he was and how great he is now.  He’s putting on weight and growing like a champ.  He said his confluence is growing and his hole is closing!  I really was shocked and amazed.  Jack is a fighter and blows me away everyday.  This really is the best news we could have ever gotten!  We don’t have to go back for 8 more months and if everything continues the way it is we can go to once yearly appointments.  Wahoo!!!!

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His scar is really starting to fade
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Joys of sitting in the waiting room for an hour I want that picture above Ivan’s head to hang in Jack’s room
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PCH Ignite Hope Walk

PCH has done so much for my family I want to give back in any way I can.  This year we did their annual Ignite Hope Walk.  We walked 1.7 miles to the hospital with battery operated candles and sang Christmas songs to the children inside the hospital.  They came to their windows and looked down on us singing to them.  It was so emotional.  There was a time when we were up there looking down at the street.  You feel so isolated in there.  I remember sitting in that hospital room and the nurse saying “you need to open the window or turn a light on”  I hadn’t even realized I had been sitting in the dark for an entire week.  It can become very depressing.  I hope we brought some joy to those little faces.  They surely brought the spirit of Christmas into our hearts.

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They spelled out the word HOPE in the window and you can see all the faces looking down
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I have such mixed emotions about being at the hospital.  I love it, it saved my sons life.  Im so grateful for modern medicine.  At the same time its so hard to go there.  It was the darkest, hardest period in my life.  It changed me forever.  I faced death and a second chance at life all at the same time.  I think the more time passes the easier it will be for me to visit.
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Life with TAPVR

We arrive at the hospital where Jack will be having his surgery.  We don’t check in or fill out paper work.  They rush us up to the 5th floor, Cardiac ICU.  Hes getting another echo to make sure the surgeon knows exactly what he’s going to be fixing.  We run up to the room hes in.  His name is already on the door.  The very first thing the cardiologist says to me is where did you deliver your baby?  He says babies with this don’t go home they have surgery immediately after birth.  I’m told its a miracle hes alive.  I often look back and I know I shouldn’t but I think what if I would have waited until morning?  Would he have passed in the night?  Would they have told me it was sids? I wouldn’t do an autopsy on my newborn.  It would have been something that got over looked that is correctable.  We walk him to surgery.  We meet the surgeon, he tells us this is our only option to save his life.  We sign the paper and they take him away.  The longest 5 hours of my life.  They call and update us. Hes on bypass, the doctor is working on him, hes all done but we cant go in for an hour.  The surgeon told us he may have to leave him open and close him up in a few days.  He wont know until hes working on him.  I don’t know what to expect.  The surgeon comes up to meet us in the waiting room.  He sits down with a banana and says everything went great.  It was the shortest surgery hes done of this kind.  He closed him up.  He tells us his lungs were very very sick.  Typically that isn’t the case with this heart defect but since he went weeks before having it corrected his lungs were filling with blood.  He has to be on a pulmonary hypertension machine, this isn’t common for this CHD.  We go in to see him, already I can tell hes doing better.  His oxygen is in the 90’s.  Its been in the 70’s and 80’s for the past week.  100 is perfect. His heart rate is perfect.  The doctors tell us this is a long recover and to add an additional week to two weeks for him being so sick when he came in.  We could be here for months.

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Medicines after surgery

Each of these long green rectangles is medication he was on a constant drip

Jacks nurse Larry has a special place in my heart forever.  He called Jack “pup”.  The name has stuck.  He will forever be pup.  He talked to him, he was sweet with him.  The next 24 hours are critical.  It will tell us how his body is adjusting to the repair.  They start him on breast milk through a feeding tube.  He’s doing well and then we have a set back.  He gets chylothorax, a leak of lymphatic fluid.  We are told this could happen and if it does he has to be put on  a fat free formula that taste awful and is difficult to digest.  The formula upsets his stomach and he has screaming fits over the course of days they up his sedatives.  We are adding medicine rather than weaning him off.  I keep telling the nurses I think its the formula, some agree some don’t.  They say there’s no other option he has to be on it for a minimum of 6 weeks.  Each day is spent trying to wean medication but also keeping him comfortable.  We bolus feed which is a large dose over the course of an hour and he screams and throws up.  The feeding tube comes up every time he throws up.  We try a small steady dose of constant food.  He just cries.  They stop feeding him because the crying fits are so bad that hes burning more calories crying than hes getting from the feeds.  I hate that they have to sedate him more to keep him from having hours of crying fits.  The dietitian says there is a way to take the fat out of breast milk but its difficult and they don’t like to do it.  After almost a week of begging and pleading that we try breast milk again one of the cardiologist at rounds says lets try it.  He said it could have been a false positive. True chylo shouldn’t go away as fast as his did.  We start up breast milk again and the crying fits go away completely and the chylo never comes back.  We stay in the hospital for two full weeks after surgery.  Each day he does better.   He relearns to nurse and breathe on his own.  We finally get to take our boy home at exactly one month old.  The doctors are amazed at how fast he recovered especially considering how bad he came in.  That last day is the day they told me just how bad his situation really was and what a miracle he is.  I do get sad that his first month of life, all those sleepy days, baby yawns and newborn stretches were taken from me.  I missed out on so many diaper changes, feeds and baths.  I realize how truly blessed I am to have him.  I am heartbroken for the families that don’t get to take their baby home.  I never in my wildest dreams thought TAPVR would come into my life.  Everything has been put in perspective because of it.  I no longer stress about the small things.  I never take a moment for granted.  I take lots of pictures and enjoy all of life’s chaos.  You really never know what tomorrow brings so enjoy today.

Homeward Bound

 

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Finding out Jack was sick

I had a perfectly healthy pregnancy.  My ultra sounds all came back great.  We truly had no idea our baby was sick.  I was nursing Jack in the hospital after I had him and I thought his breathing seemed odd.  Almost as if his whole body went up and down with each breath.  I asked the nurse if his breathing was normal and she assured me it was fine and that babies breathe differently while learning to eat.  I didn’t know to ask what his pulse ox came back at.  I didn’t even know what a pulse oximetry test was or why they taped that little red light to their little toe.  A pulse oximetry test is one of the most important test your baby gets.  It measures the oxygen in their blood.  This test is a red flag for a congenital heart defect.  Unfortunately not all states require it but our state does.  He failed his and they tested again and he passed with the lowest possible reading.  I had no idea.  I went home 24 hrs after having him.  Sometimes I am grateful for that week I got with him, my perfect little angel.  Before tapvr before the stress and worry.  But because he went so long undetected his little body suffered worse than it should have.

The few photos I have without his scar
At around 6 days old Jack started throwing up.  No big deal, my third had acid reflux.  I was ready to deal with it again.  His poop started to slow down and became a darker color.  I didn’t think much of it he was still getting used to eating and being out in this strange world.  On his 8th day of life he spit up and it was bright yellow.  I started worrying I called Ivan and said he threw up bile.  Then he threw up again.  I called my pediatrician and left her a message.  It was after 5 o’clock and she didn’t want me to go the whole night with out him being looked at.  She said I’m sure hes fine but I want you to take him to the closest children’s hospital and have him looked at.
We get to the children’s hospital, it is attached to the adult hospital and the emergency room is being remodeled so they are sticking the kids and adult all together in the waiting room.  I stand outside of the hospital with my tiny newborn baby.  Ivan checks us in and I tell him call me when they are ready for us.  My baby has acid reflux and they are going to send us home, I certainly don’t want him catching whats in there.  Ivan calls me in, they want to check him in and put a band on his wrist.  The lady asks me whats wrong.  I tell her hes thrown up a few times.  She asks to see him.  I’m hesitant, shes been touching sick people.  I pull the blanket down and hes looking grayish. She asks if he always looks like that and I said no.  My life then turned into a movie.  She rips him out of my arms, hits a button that sounds an alarm and flashing red lights.  Doctors and nurses go running into a resuscitation room.  They put an oxygen mask on him.  I can hear him screaming and I cant do anything to help him.  The Doctor is asking me what happened.  I have no idea, he’s not sick he doesn’t have a fever or a cough.  I haven’t had visitors that could have passed on their germs.  They tell me he has to be intubated, hes not getting enough air.  I can’t stop sobbing.  The pain of seeing your baby lifeless covered in tubes is indescribable.
The throwing up and slowing of bowels lead them to think something is wrong with his stomach or intestines.  Initially they test for pyloric stenosis.  They insert a dye into his stomach and wait for it to pass.  We waited hours and his stomach wouldn’t pass the dye into his intestines.  When your body is as sick as Jacks was it stops making blood and starts shutting down organs starting with the least important, the stomach.  We ruled out anything with his stomach and moved on to other things.  His lungs sound “crunchy” all the doctors say.  His lungs are sick and they tell us he has pneumonia that started as a staph infection.  How is this possible?  I didn’t let anyone come over, we weren’t sick.  How could he be sick?  Day after day he wasn’t getting better he was getting worse.  They retested for staph and it wasn’t showing up but he was still sick.  He never had staph, it was a contaminated specimen.  Six days of sitting in a hospital room by his side. Crying, praying, begging and pleading for him to get better.  He had so many x-rays, ultra sounds cat scans and nothing.  No answers.  I was in physical pain my heart physically ached as I sat there watching my baby slowly die.  I couldn’t hold him or comfort him.  I couldn’t feed him or change his diaper.  All we could do was sit, sit and wait for our prayers to be answered.
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The entire week was horrible but the night before his surgery was the worst night of my life.  We still didn’t know what was wrong with him.  When you have a baby on life support they sometimes try to fight the machine. His little body would breathe against the machine.  Alarms would go off.  People would rush in, they’d tell us he was fine they just had to adjust the machine or his medicine.  But the last night before surgery he kept fighting the machine.  His oxygen levels would drop dangerously low, his heart rate would drop.  All night the doctors and nurses would come rushing in to the sound of alarms and try to stop him from working against the machine.  Nothing was helping.  They paralyzed him, laid him on his stomach and made the machine do all the work.

That next morning they had a cystic fibrosis test scheduled and while making the rounds his doctor said lets do an echo cardiogram of his heart.  At this point they had done so many tests I thought this one would come back fine just like all the others.  My three other kids were being cared for by our family and my oldest needed to go to the doctor.  Ivan told me to take her, I hadn’t left that hospital in 6 days and only seen my other 3 kids once.  I got to her school to pick her up and got a call I will never forget.  He said come back here now.  My heart sank, I thought he had passed away while I was gone.  The one time I left in a week and he passed without me by his side.  He said hes ok but we have to talk and make some decisions.  I raced back to the hospital, left my daughter at the nurses station and went to Jacks room.  The cardiologist told us Jack had infra cardiac TAPVR.  The veins that should attach to the left side of his heart and carry the blood back, attached to his liver.  The left side of his heart wasn’t receiving blood.  He was air-evaced to PCH while we drove over.  As devastating as it is to hear that your son needs life saving open heart surgery after a good hour of crying as they prepped him to be taken I felt at peace.  My prayers were answered, we finally knew what was wrong.
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Jacks Birth

Monday April 15 2013, I remember it like it was yesterday.  Tax day, the day of the Boston bombing, the day I brought my 4th sweet angel into this world.  Im not normal, I don’t go into labor on my own.  At least not until I had Jack.  I had become somewhat of a joke to those who know me.  Ive gone all the way up to 14 days late with my second baby.  I wait as long as my midwife lets me then she strips my membranes and finally a few days later I get to hold my newborn baby.  I was 8 days late with Jack and started to have labor pains Sunday night but couldn’t believe they were real.  This has never happened.  Sure enough they were.  When I got to the hospital I was a 6 1/2.  I move quickly and before I knew it I was ready to push.  This was my first time without an epidural but there was no time for one so pushing this baby out was my only option.  It was truly one of the most amazing experiences of my life.  My midwife told me to reach down and pull him out and I did.  I set that baby right on my chest and instantly fell in love.

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I knew from that moment something wasn’t right.  It wasn’t anything I could see.  It was what I felt inside.  I kept thinking this is just my hormones.  I hate the baby blues.  I couldn’t shake the feeling.  I felt like I didn’t have time with this baby.  I enjoyed every second of him feeling like he wouldn’t be mine for long.  I remember telling my husband to sleep, Id take care of him.  I didn’t want visitors.  I didn’t want anyone taking away the time I did have with him.  He was such an easy sweet baby.  Slept the day away in my arms.  That first week home from the hospital is one I will forever cherish.  Its the only newborn stage I had with him, the only memory I have of his beautiful little body before the scars.  The next three weeks were taken from me.
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