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My day to day life

Baby Z: Post Surgery PCCU February 26, 2014


Day 4 (November 21, 2013)

The hard part was over, now what. Baby Z had gone through open heart surgery and survived. Now we wait. Wait to heal and wait to hear if we would be home for Thanksgiving, wait on everything. We got a sleep room our first night in the PCCU, pediatric cardiac critical care unit. These are slim pickin’ and hard to get but we were so thankful for one. It had a queen size bed with a foam mattress and not much else. You had to check in at 9:00 pm and be out by 10:00 am. That room was meant for sleeping only and that is what we did. We awoke at 6:00 am and Mr. Z ran down the hall to check on Baby Z. He wanted to get there before to nurse change to get an update on how he did in the night and to also meet the day nurse.

Baby Z was still much sedated and did not move or open his eyes until late that night. He was still on all the medicines but he was very swollen due to all the fluids he received to increase his blood pressure from the night before. They added Lasix to get some of the fluid out of his little body but he still was not peeing enough, so they upped it more. This seemed to help and we were producing lots of urine by the afternoon. The scariest part as this time was the ventilator. I hated watching a machine breath for my baby. The night nurse advised me that they were going to start trying to wean him off of the vent and run some tests during the night. They would take him off for an hour and back on for 3 hours and continue until they thought he was able to come completely off. They draw blood at these times to see how our blood gases were doing and if he passed 3 blood draws he could come off. I was super excited to hear this news. By the time we went to bed we got the news he had passes his first test.

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Day 5 (November 22, 2013)

Thankfully we were once again able to get a sleep room for the night. We awoke at 6:00 am and rushed down the hall to the PCCU. We walk into his room and see our baby with no breathing tube. He was extubated right before we arrived, we missed it :( He now had a nasal cannula that was giving him small amounts of oxygen.20131122_115626-MIX20131122_102752

We had big changes this day. They decided today they would let him try to eat for the first time ever. He had a speech therapist come to evaluate him and she thought he would be able to give it a try. We started with 5 mls of breast milk and he loved it! They also removed some of his IV medicines. It was such a nice feeling to start seeing things less stuff on him. That night we did not get a sleep room. We stayed in his room which had a fold out bed big enough for one person to sleep and a rocking chair. He did get one of the newer rooms that had its own private bathroom, that was nice plus. It was not comfortable by any means but we both were able to snuggle tightly on that bed and slept okay during the night.

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I loved seeing less of theses. We are down to only 2 rows! There were 4.

Day 6 (November 23, 2013)

Not much happened this day. Mostly just waiting to see how he did without most of his IV medicines. They were able to stop all the medicines, even his heart meds, and waited to see how he would do. They also removed his Art line (a thin catheter inserted into an artery) this had to be done while a heart surgeon was on duty in case some happened since this line ran straight to his heart.  He was now on oral calcium, Pepcid, and Lasix and doing great! They were happy with his urine output and was able to get his urinary catheter removed and got to wear a diaper.

We once again slept in his room with him but we liked it much better because we did not worry as much as before when we were in the sleep rooms. It was not comfortable but we did not care. He had a flat screen TV and Mr Z, being an engineer, rigged it so we could control it via cellphone, so we had some entertainment. We still had our family coming and going the whole time so there was not time to get bored. Once everyone left, visiting hours were 9:00 -9:00, we relaxed and tried to sleep. Nurses came and went all night long but they really tried not to disturb you. We LOVED the nurses in the PCCU! 20131120_190155

This is his room in the PCCU

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This is the view from the back were we stayed.

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Day 7 (November 24, 2013)

Big day today! We were moving up to the 7th floor and mommy finally got to hold Baby Z for the first time since his surgery! What a relief! Baby Z would be moving to his own room. There we were excepted to do most of his care,unlike the PCCU, there was 1 nurse to 4 babies on the 7th floor. In the PCCU he had his own nurse, just for him. They rolled his big boy crib in the room were getting ready for the big move. We were so happy. Everything was happening so fast. The doctors did their rounds, they released him, we packed all our stuff, held Baby Z, the nurse packed Baby Z things and off we went. We were in his room before lunch time.

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Baby Z, Surgery Story February 5, 2014


I didn’t sleep well the first night in the hospital without my baby. I just felt wrong. He was sleeping in his NICU with his nursing staff at his side while his Mom and Dad were in another hospital. I was now moved in the postpartum ward at Vanderbilt, exhausted and waiting to get discharged but that would not happen for another full day.  As soon as we were able to go visit him, we did. My nurses were not very happy with me because I was never in my room; I had more important places to be. Day 2 was spent in the NICU. In the NICU there were many rules to follow. Only 2 people in the room at a time, must wash hands before entering, you had to be buzzed in, and if you weren’t mom or dad you had to be “the list” to go back.  The whole day was spent letting people in and out to visit and anxiously waiting to hear from the surgeon hoping we wouldn’t miss him. We had no time when he would be by to talk with us just sometime in the afternoon.

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At this point we still did not know what we were facing surgery wise. We didn’t know if he was going to be able to use his full heart with some alternations or were we heading down the half a heart, 3 open heart surgeries route.  It was late in the evening when his surgeon stopped by his room to talk. They let more than allowed amount of people in the room for this conversion. I apprehensively sat next to my husband awaiting my newborns fate.  He said surgery was going to be early the next morning and his plan was to repair his narrowed aortic arch and patch the hole in his heart. Once inside, he was going to have to measure the left side of the heart to see if it would be adequate in size to work. If not then we would have to have the first of a 3 part surgery series, the Norwood.

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The unknown was killing us. We did not know what to say to each other let alone to our family and friends who were waiting in the hospital day and night with us. How do you act when you don’t even know if your baby was going to live or die? Exhausted, we both crawled into my small hospital bed and we tried to sleep as much as we could.

End of day 2

 

We had to be in his room by 6:00 am the next morning but we arrived earlier to spend some time with him. I was trying to stay strong but I could not take it any longer. I broke down once I knew it was really going to happen. I sat there rocking my sweet boy in my arms not knowing if I would ever be able to hold him again. My 2 day old son was about to have open heart surgery and there was nothing I could do about it. They said it was time to go to per-operation area and they rolled his warming unit onto the elevator and up into his little waiting area. There was no one around us, just husband and I alone with our little man. We once again tried to stay strong for him but once the nurses and doctors said they were ready for him and rolled him back, we both lost it. We stayed in the back until we could get a grip on our emotions. After about ten minutes, we headed into the surgery waiting room were our family was waiting. They all hugged us but we were emotionless by this time. I still had to go back to Vanderbilt to get discharged, anything to keep me busy. It took about 2 hours to pack everything up, shower and get my final checkup. We patiently waited by the cellphone for the surgeon’s nurse to call. She would call us every hour or so with an update and let us know how he was doing. The conversation was very short but at least we knew how surgery was going. We got a call stating that he was about to be out of surgery and to head to the surgery waiting room. I was not sure what to think. The surgery was supposed to take a lot longer than 3 hours. Did something go wrong, was he not able to fix it, did he code? I was a mess. We still were not out of postpartum ward but yet again I waved to my nurse and ran out the door.

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Waiting to go back for surgery

We had a nurse at the Children’s Hospital nurse take us the long way to around were we would hear the news alone from the surgeon before having to tell our family what was going on. As soon as we sat down in the crowed waiting room, out came the surgeon in light blue scrubs. Very calmly, he said he was able to repair the aortic arch and patch the hole. The big news was he said that the left side of the heart measured adequate! We could have fainted. Our baby was going to have a whole heart! He said he would be in recovery then moved to the PICU within a few hours. We calmly, holding hands, walked to the elevators and looked at each other and lost our emotions once again but this time they were tears of happiness. We had been through so much together the past 9 months and finally we had an answer. We walked into the NICU waiting room just crying. Our family did not know what to think, good or bad? I was finally able to get it out what the surgeon had told us and hugged everyone. To celebrate we went downstairs and had lunch and ice cream. We finally were able to go back to postpartum and finally get discharged.

We waited at the PICU until they said we could go back and see him. We prepared ourselves for the worse. I knew he would be sedated and be hooked up to many machines and IV’s. They said he may even be hooked up to ECMO. This is a heart and lung bypass machine. We walk into his room; there he was, our sweet little baby boy. He looked so good! His nurse, Anna, was telling us about everything that was hooked up to him and why. She was working on him and we were just getting settled in then it happened, he coded. His blood pressure hit rock bottom, stat button was pressed and we were moved to the back of the room. The room filled with doctors and nurses and then in ran his surgeon. He asked the nurse what she did. He said he was too stable for this to happen. The nurse came to the back of the room to tell us what was going on. She stated that he was very dry. Once they started giving him lots of fluids and his blood pressure started coming back up. The alarms stated to silence and he was finally stable once again. She told us he would be very swollen the next day due to the fluid but in a day or two it would go back down. This was such a scary moment that we will never forget.

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I have never posted this picture before but now I feel okay doing it. See that little thing laying on the PCCU bed, that is Baby Z. He is hooked up to a lot of stuff :(

 

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These pictures are scary to look at even now.

About 8:00 pm, our family was able to come back and see him, 3 at a time. Everyone was happy the way he looked. 9:00pm came and visiting hours were over.  It had been a long day and we were able to get a sleep room for the night. We gave our little man a kiss and went to bed. We slept very well that night. I do not know if this was due to exhaustion or relief. Whichever it was, it felt great.

That was the end of day 3

 

Baby Z’s Birth Story January 6, 2014

Filed under: Baby Z — Sheena @ 5:42 pm
Tags: , , , ,

I know it has been awhile since my last update, I have been an extremely busy mommy. I wanted to share in more detail about the experience we went through while at Vanderbilt Hospital. I am going to break in down into different blogs because it is a big story to tell.

To start the journey off, will be his birth story.

November 7th was my last day in Knoxville; I was packing my bags to move in with my mother-in-law for almost 2 weeks before I was scheduled to be induced on November 17th. I choose option vs. being induced at 37 weeks because I wanted Baby Z to be as big and as healthy as he could possibly be. My husband was only going to be able to stay with me until Sunday, a week before the big day, because he had to go back to work. What a long week it was without him. I have never been away from him that long plus being 39 weeks pregnant did not help the situation. I was worried out of my mind! I was hoping I would not go into labor early with him being 3 hours away; plus, I did not know what to expect with Baby Z. Would he be big enough, healthy enough, and strong enough for surgery? I honestly did not know even if he would survive. I had no guarantees about anything. That was the worst part, the unknown.

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Husband in hand, the big day finally arrived. We packed the car and headed to the hospital ready to meet our sweet Baby Z. The drive was slow due to the weather. It was pouring down rain and extremely hard to see. It also happened to be a full moon that night. We stopped along the way for pizza. My “last meal” as my family called it before heading to the hospital. Once we arrived at the hospital, I was admitted in labor and delivery at 8:00 pm. I was in my room at set up about 10:00 pm. The room was nice and large. It had a big window, bathroom, rocking chair, fold out beds, and a flat screen TV. The nurse came in and gave me a medicine that would thin out my cervix. I was told, once that worked (in about 4 hours) that I would be given another medicine named pitocin to start my labor. The nurse informed me that it could take 24 hours before Baby Z would arrive.  We were ready to settle in for a lengthy stay.

Later in the night, the nurse came in the room to check my progress. The medicine had done its job but they wanted to make me dilate faster, I was only at 2 cm. They decided to help me along with the balloon catheter procedure. This is where they insert a catheter into your cervix and fill it with water. Once filled, they will tug on it to help your cervix dilate faster. This is better for baby, as it doesn’t seem to cause any fetal distress like pitocin can. I still had not had any pain medicine at this point and that was PAINFUL! I could not even describe how bad that hurt. After it was all over, I had to get up to use the bathroom. I was trying to be so careful. I didn’t want to have to go through that again, but in the end it fell out anyways.  The husbands calls the nurse and tells them what happen and they said that was good and we should be on our way into active labor. That worked fast. I was having contractions steady now, every few minutes. I was trying to be quite and let my husband sleep because he had also had a long day. My mother set up with me and helped me with the pain until it become too much and we woke him up.

The contractions were growing fast and becoming very painful. My husband got concerned when I was having contractions back-to-back, not even a minute apart, and paged the nurse. My “birth plan” was to have a natural labor without any pain medicine; however, once I asked the nurse about the room with the birthing tub and was told that would not be an option for me since the baby had to be monitored at all times, my plans changed fast. I gave it an honest go, about 6 hours, but since I was not able move due to the monitors, I needed the epidural. The doctors came in and they were much welcomed. They made my mother and my friend leave the room and only the husband was allowed to stay. They told me to sit on the edge of the bed and to lend forward into my husband. I had to sit still. There was a nurse was on my right side holding me down to make sure I did not move. I was informed that some people feel a zing that runs down their right leg but most the time it is painless. Well, if you know me then you know my luck. The doctor started the procedure and ZING right down my leg. It felt like I was electrocuted; try to stay still during that, sure thing. The doctor had to start all over. Second time around, ZING right down my leg again. I was not in a good mood by this time. I was having contractions back-to-back while being electrocuted down my leg along with people holding me down; I was so ready for some relief. Finally, they got it in place and the epidural kicked in. Sweet relief! They gave me a button to press if I thought I needed a boost of medicine but I never pushed it. I could still feel my legs and even move them some. It felt like when your legs “fell asleep.” The best part was there was no more labor pain.

The nurse came in again to check me after the epidural was in place and working. She asked me how far along I thought I was. I guessed maybe 4 cm. I knew the past few hours were very painful but I had never done this before so I wanted to set myself failure. Nope, I was very wrong. She made my mom, husband and friend all guess. Everyone was too low. Shockingly she said told us that I was 8 cm! I had gone from 2 cm to 8 cm in the matter of a few hours. That explains why I was in so much pain. Finally, I able to get some rest and gain some of my strength back. When I feel asleep the sun was rising outside my window so I knew morning had came. I did not look at the clock much but I knew they came in to check me again a few hours later. I was told I was at 10 cm but he was still high so they just let me rest more and let him move down on his own. I think it was around 10:00 am and the nurse came in and said it was time to push. I was so tried by this time but I knew I had a lot of work ahead of me.

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I wasn’t really sure how to push. I know that sounds odd but I thought I was going to do it wrong. The nurse reassured me that I was doing a great job. She told me when I was having a contraction and push for 10 seconds, breath, push for 10 more seconds. I thought labor would be a lot more exciting than it really was. It honestly was very calming. The TV had the relaxation channel on and it was super quiet in the room. The nurse even made a comment that I was so composed to be having a baby. That is the one thing we really wanted, a stress-free labor. We knew after he was here we would be stressed to the max thus we wanted the calm before the storm.  11:00am, his head was crowning and it was time for the doctors to enter the room. That is right doctors, many, many doctors. Then in came the large NICU team. Vanderbilt has large delivery rooms but by the time everyone was in the room (12 people) there was not room to move. I could not even see him being born because a doctor had to stand in front of my mirror. After and 1.5 hours of pushing out he came, 11:18am. I was told that my husband would be able to cut the cord and I would be able to hold him for 15 minutes before they took him to Vanderbilt Children’s Hospital but sadly this did not happen. Out he came, doctor cut the cord, they held him up said “baby boy” and took him to the NICU team at the warmer. This is when he started crying and that made me feel better. Mr. Z had to push his way to be able to see him and to get some pictures. Once they got his IV’s started they let me hold him for about 30 seconds and out of the room he went.

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We agreed the Mr. Z would go with him to Children’s Hospital while my friend would stay with me. All of our family was able to greet him in the labor and delivery hallway. Once they did the footprint and the grandparents got some pictures, they rushed him down the long hallway that connected the two hospitals.

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Mr. Z told me, that his room in the NICU was lined wall-to-wall with sterile equipment. The room and once again was full with doctors and nurses. Everyone had a job to do; some were getting an echo of his heart, others taking his vitals, and some putting in his IV lines. You could cut the tension with a knife. Everything was going to plan then a nurse yelled “oh, he got me.” She said she had been a NICU nurse 22 years and never once been peed on until now. That loosened the tension and made everyone feel more relaxed. I was getting text updates with pictures, which made me feel better but I wish I could have been there for him. 

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With Daddy in the NICU while Baby Z is getting an ECHO

After 5 hours I was able to go see him for the first time. My husband wheeled me into his little NICU pod. He looked much better than I pictured. He looked “normal” with just a few lines coming from him. He was breathing room air and heart was beating well. All vitals were normal and he even scored a 9 on his APGAR. We even got to hold him that night. This goes to show that many people get home from the hospital with “normal” babies and then after a day or 2 they turn blue. We were very thankful we knew prenatal that he was going to be special heart baby, but many do not.

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My Parents

 

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I was with almost everything that day. I was a little upset that the labor did not go as planned once he arrived. There was no reason to rush him off like they did and my husband should have been able to cut his cord. All the doctors and nurses kept saying “he is so pink.” I guess there miss communication among the doctors and the NICU team. Still, I will never get that back but I am just so thankful for my little man.

8lbs 5oz and 19 inches long  

That was the end of day one, 11/18. 

 

Baby Bump: 9 Months (Plus Heart Update) October 23, 2013


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Baby Facts

  • Length: We should be 20 inches long
  • Weight: 6 lbs 8 oz
  • What’s is new: Lots of changes this month. We got the news that our little mans heart didn’t grow as much as it had last month. We were sent to Vanderbilt Children’s Hospital for another echo. They agreed with the pediatric cardiologist in Knoxville and said it would be safer to deliver in Nashville. I am going to be induced in a few weeks and the plan is to watch him once he is born and see if his heart can keep up with his little body. If not, then they are going to do a procedure to open his forman ovale in his heart to help out the left side. If this doesn’t work then we are looking at heading down with the first of the 3 open heart surgeries, Norwood Surgery. On a sweeter note: I am busy moving about and I spend most of my time “breathing” and “sucking.” I have lots of hair and some fat rolls.
  • Movement: He isn’t doing flips and turns anymore but he is kicking and punching all day long, plus many sleepless nights. He takes up most of my abdomen and is curled up in a ball ready to make his appearance.
  • Growth: We had a large growth spurt last month. This month we leveled back out and are back on track for his age. Still showing about 1 week ahead of normal but that is no big deal. The doctors say ultrasounds can be up to 2 weeks off and plus or minus a pound.

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Mommy Facts

  • Weight Gain: 32 lbs. No weight gain this month.
  • Stretch Marks: I must have good genes because I still don’t have any stretch marks yet. We still have a couple weeks to go, figures crossed.
  • Craving: Coffee and Cokes, not really sure why. I am not giving in too much.
  • Symptoms: Back Pain still is the worse. My ribs hurt and my legs hurt and I get heartburn if I eat, bend over, or take tums. I’m not too comfortable these days.
  • Looking Forward:  The next few weeks. I am nervous what it may bring, the good and the bad. Looking forward to my second baby shower on the 2nd. Lots of planning ahead of me.

 

 

Baby Z Heart Update October 18, 2013

Filed under: Baby Z — Sheena @ 4:30 am
Tags: , , , , ,

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With little less than a month to go in this pregnancy Baby Z is getting ready to make his debut. I am 35 weeks with 5 more to go. Hopefully he will stay in there 42 weeks. If you have ever been pregnant before that last statement may have knocked you off your feet. Yes, I want to stay pregnant as long as I can.

Here is why; Baby Z had his monthly pediatric cardiologist appointment on Wednesday. We got great news the last time we were there but this time not so great. His little heart did not continue to grow as it had in the past months. His issue is the left side of his heart is small but is developed. The problem this time is that his mitral valve is at 6mm it needs to be at 8mm at time full term and it didn’t grow at all in 4 weeks. If  it does not grow to 8mm then we are going to have a long road ahead of us. The Dr is now saying he has a 50/50 chance of having Hypoplastic Left Heart Syndrome :( This means he will have to have three open heart surgeries to make his heart work property. In the end he will only live his life with a half heart. We are scheduled for an appointment at Vanderbilt Children’s Hospital on Tuesday for a second opinion. I will keep you updated on his progress.

 

Baby Bump: Month 8 October 5, 2013

Filed under: Baby Z — Sheena @ 2:03 pm
Tags: , , ,

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Baby Facts

  • Length: 18 inches He is short like me.
  • Weight: 5 lbs 10 oz
  • What’s is new: We got GREAT news from the pediatric cardiologist this month. Finally, our little man got in a good position for his echo ultrasound. The doctor was happy to say he no longer thinks he has COA or IAA! He still does a normal to small aortic valve that we will need to watch once he is born. He is not down to have surgery at this time just to be monitored at the hospital. They even said he may go home when I do. I do not want to get my hopes up but it is sounding better! In 2 weeks is our next appointment then every week after that.
  • Movement: I have heard that the bigger they get the less they move due to there not being a lot of room. This is not the case for my little man. He moves all the time and you can see it on the outside. It is very alien like to me but people love watching him kick around.
  • Growth:  He is a big boy this month! Baby Z is a chubby baby about 3 weeks bigger than normal. He is measuring at 36 weeks at 33 weeks. The ultrasound below shows his fat rolls :) Oh, and he has patchy hair too. He could come earlier than excepted but I want him to bake as long as possible.

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Mommy Facts

  • Weight Gain: 32 lbs. I am not too happy about that number.
  • Stretch Marks: Still none
  • Craving: Pancakes and fries
  • Symptoms: Back pain! My back hurts when I sit, stand, or lay down. It is hard to get any relief. Heartburn, I live on tums but now they aren’t really working that well. Third trimester isn’t for the weak at heart.
  • Looking Forward: Birthing classes; we start our 4 week long classes on Monday! Setting up the nursery! It is about time to paint and order the furniture. Plus we are having fun trying out all the new baby things with help of our yorkie, Mr. Mal.

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Baby Z’s Baby Shower September 18, 2013

Filed under: Baby Z — Sheena @ 10:24 am
Tags: , , , , ,

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Last Sunday was Baby Z’s first baby shower and he was “showered” with countless gifts. I was super energized and even purchased a new dress for the occasion. The dress came in merely 2 days before the big event, it had me on pins and needles if it was going to arrive on time or not. I have never had a baby shower before so I wasn’t sure what to do. I have attended as a guest to several so I kind of knew what to except. The Safari Theme shower was thrown by my husband’s step mother and with help from her sister-in-law in her home and it turned out great! She went out of her way to make it very special.

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I was surprised by the turn out. There were many people there whom cared about my little man enough to spend some of their weekend at his baby shower. Sorry, I don’t have pictures of everyone who was there. I will have to get them from my father-in-law. There was great food and fun games. We played the “don’t say baby” game or you lose your necklace and a fill in the blank nursery rhyme game. I only got 7 out of 25. I guess I need to brush up on my nursery rhymes before Baby Z arrives because I had no idea who the three men in the tub were.

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Gifts! Wow what can I say but thank you! I am not one to except anything from anyone and I work hard for what I have and I know others do the same. For the guest to shower my little man with such wonderful heartfelt gifts is amazing to me.  It is very humbling to me. Again, thank you to all my friends and family that attended. Your gifts and attendance meant the world to me.

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