Friday, September 21, 2012

One Year Later Part 4

“For You formed my inward parts; You covered me in my mother’s womb.” Psalms 139:13

Cross stitch I made while on bed rest.
         Welcome, for those of you just joining us today is day 4 of my son, Josiah's story as of yet.
You can read the first 3 days by clicking here: 

Day 1    Day 2     Day 3

Under the blue light therapy. During 1st week.

      Since I reacted to the spinal tap, I didn't get to see Josiah much that first week. I spent most of it lying flat in the hospital bed with an ice pack on my head. That was really hard but at the same time a relief in a way. I wanted to see and visit him, especially since I was already there at the hospital. But it was always so overwhelming in the NICU.   

Terms I didn't understandQuiteAlarms going off..Blue lightsNo touching or handling himTubes and wires everywhereantibioticsBlood transfusionsfluid in the lungs

     I could write several posts on life in the NICU, but there's not enough time for that.I will do my best to make this post "small." *smile* If you ever have questions about premature babies or NICU life, If you want to know more I'd be happy to share later on. It's crazy looking at the pictures he looks so much bigger then he was. It was skinny and about the size of perhaps a squirrel. 

Right after they stabilized him. His eyes where open !

     The NICU is quite expect for the ring of bells and alarms going off (Oh and crying babies. *smile*). There is an area for the stronger babies, that are not in an incubator and a dark even quieter area for babies who are. All the little babies in incubators start with blue ight therapy because they have such high amounts of jaundice and they wear little black eye shields. The incubators have blankets over them to keep them even warmer, though each incubator is regulated at it's own temperature. You are not allowed near another baby, for their needs are all so different.

“And the Lord, He IS the One who goes before you. He will be with you, He will not leave you nor forsake you; do not fear nor be dismayed.”  Deut. 31:8

     From the beginning the doctors marveled at what a little fighter Josiah is. I'm not surprised, God gave him that personality to survive through it all! Even that first night, the doctor said he was wiggling and thrashing his little body. While in the NICU they had to constantly strap him down (gently of course), because they didn't want him to hurt himself and he was using up too many calories! They wanted him to gain weight, which was VERY important in order for his lungs to develop.   

7 days old. They unstrapped him, so he could stretch and say, "hi."

     Risk of infection and sickness where always a BIG concern. You have to scrub up and wear a gown before entering the NICU. We eventually could stick our hands into the little holes to touch his hands. But you always had to sanitize before touching him. You could leave the little doors open to quietly talk to him, but could breathe on him.

7 days old, fighting an infection.

But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows. Luke 12:7

     Almost right away they realized that he was fighting an infection (a parents worse nightmare). They discovered that's why I went into labor. He was on antibiotics for several weeks until it finally cleared. Praise God for diligent nurses, they noticed two minor things (I can't remember what they were), that change and checked for infection. Who knew that something as simple as wet diapers or body temperature changing by a degree or two could indicate something so serious?! Because they caught it at the beginning he had a fighting chance and got through it within a few weeks!!

Kangaroo Care.

     Though it was scary, our struggles could have been worse. His heart had a valve that didn't close off (it does it in the womb). After a few days and rounds of a medication, the valve closed.Once again God spared us! I couldn't even think about heart surgery. He also had bleeding in the brain, but it was small and healed on it's own. Thank you Lord! 

15 days old. He LOVED to hold things. They made him a little toy to hold.

      When Josiah was about 1 week old, we found out his lungs where filling with fluid. They had to puncture one of his lungs and insert a tube. If it didn't work and his lungs continued to fill with fluid, it would be too much pressure on them and they would collapse one after the other and there would be nothing they could really do. If that where to happen, it would cause his heart to collapse and he would die. Talk about SCARY news!! I could only concentrate and think about the present moment though. Once again the Lord spared us much heartache, and the tube worked, the fluid drained, and they where able to take the tube out! Every time I see his scar, it reminds me how fragile life is! It's a reminder that we are here today and gone tomorrow. Am I investing the time that I should into my children? Am I living my life for the glory of God?

“Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day [is] its own trouble.” Matt. 6:34

     After that he continued to slowly grow and get stronger. I got to finally do kangaroo care (snuggle him up against my skin)!!! I can't even begin to tell you the JOY of finally being able to hold your child. Quote from scrapbook, "Mommy got to do kangaroo care for the first time! Sat. Oct 1 (day 14). First time I heard you make a noise! You squeaked (like a mouse) then settled in and fell sound asleep on Momma!"

The nurse took our picture. I was trying not to cry. It was SO awesome but terrifying at the same time!

      My husband and I spent as much time as we could visiting and reading to him, (so he would recognize out voices). I didn't get to spend nearly as much time with him as I would have liked, which was REALLY hard. It was also REALLY hard to see him react to his main nurse's voice more so then mine. I wanted to cry, "I'm your mama, not Mary!" But I'm and always will be grateful for her loving care and treating my son as her own.

He continues to grow...

Feet Day 1
Feet Day 30 (a little bigger)

     I got sick and couldn't see our little guy for 1 1/2 weeks! Augh! That was hard. But when I got there he was wearing an outfit (besides dressing up for (Halloween) for the first time! I remember thinking he looked like a "real" baby. Oh, course it was WAY too big even though it was a preemie outfit. But oh so cute!

     In November he got to move to the more mature preemie section. Yeah! After Thanksgiving he drank a little from a Haber-men feeder (a special bottle for cleft palates). And almost immediately they gave the green light to have him transferred via ambulance to a hospital closer to home. We were SO excited! The hospital he was being transferred to was the same hospital I delivered my girls at with my midwife. That excitement was soon squelched!

Sleeping with Daddy! 

“Thus says the Lord, your Redeemer, And He who formed you from the womb: “I am the Lord, who makes all things, Who stretches out the heavens all alone, Who spreads abroad the earth by Myself;” Isaiah 44:24

     To make a long story short, it seemed half the nurses were rude, the head special care doctor was VERY rude to me (she made me cry after meeting her for the first time), the wouldn't allow the girls to visit, and they had crazy rules as to when you could visit! St. Elizabeth's encouraged you to visit whenever you could, even if that meant coming in at 1am and leaving at 5am. You could visit whether it was feeding time or not, as long as your child was stable you could hold them. Not at Holy Family. They only wanted you to come during feeding times and if I couldn't make it they made me feel soooo guilty. I WANTED to visit my son, but I had to find people to watch the girls and it had to work out that they could do it at the same time as his feeding, plus I had to calculate Naomi's nap time. Augh! I couldn't wait to get him out of there!

First Christmas at Holy Family

“Before I formed you in the womb I knew you…” Jeremiah 1:5

      Joseph was having a hard time drinking and still got most of his food through the tube down his throat. He would gag and choke because of the cleft palate and he would get tired very quickly due to his lung disease. He was marked failure to thrive. He spent his first Christmas at Holy Family and was then transferred to the NICU at Children's Hospital in Boston. Praise the Lord!! I couldn't wait to get him out!

     Children's hospital was awesome! Just like St. Elizabeth's they work with as a parent and understand that this is a difficult time and that perhaps you have other children. Once again the girls could visit him. To top it off, they allowed Dakota to hold Josiah!!! Oh, the excitement! *smile*

     After about a week Josiah had surgery to have a G-tube put in his stomach. Woohoo! One step closer to going home. Exciting and scary! Then the girls and I got a stomach bug and had to wait a week to see him. The hospital needed the bed space so as soon as I was better, i came in to train on giving him his medications, feeding and care the g-tube, how to work the feeding machine and oxygen machines, and all the risks and what to do in an emergency. Whew! It was a lot to learn in two days! On January 16, 2012, after 3 NICU's, 4 months and weighting over 9lbs, Josiah Benjamin got to come HOME!!!!

Right after surgery. He had an IV in his head. Yuck!

Josiah waiting to go home!

“I waited patiently for the Lord, He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and the mire; He set my feet upon a rock and gave me a firm place to stand.” Psalm 40:1-2 

Tomorrow I will wrap up this week by sharing what life has been like having a child needs at home and where we are today.

For His Glory,


1 comment:

  1. Awww Christen! Josiah is so sweet. I loved reading his story. I don't even know you, but this really touched my heart, and I'm sitting here crying. I never had a child in NICU. But I understand the struggles of having to go at visiting hours. my mom was in ICU, and wasn't expected to live, and the first hospital she was out, we couldn't go before 10 am and had to leave in the afternoon, and had to leave by 8 pm. We were able to transfer her to the Mayo Clinic where we SLEPT there. It's great to find TRULY caring physicians.

    Looking forward to reading the next post. God Bless you and your family!


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