Cords, Tubes, Monitors ect

I thought I should take a post to explain the cords and tubes and monitors that were hooked up to Joshua throughout his NICU stay.

In this picture there is Joshua's NICU label which identifies Joshua the same way the hospital wrist bands do. It matches our wristbands for him. -Side note: We thought we had to have our wrist bands to take Joshua home, so we wore them religiously, but after about a month they wore out and fell off. When we brought them in for a replacement, the nurses told us they definitely didn't expect us to wear them until Joshua came home, that a driver's license would be fine if there was any question.

The line coming out of his diaper and down to the left is a IV line that is attached in his umbilical. When that line went bad they put in a normal IV in his hand for a couple of days then they put in a picc line. I was at the hospital with my mom the first time they tried to put in the picc line. It was horrible, they tried for like 15 minutes and I could hear Joshua fussing, but they wouldn't let me near him because the whole area had to be sanitary. Then they failed to get it in. I was about ready to bawl for him, since he was just whimpering. They said they would try again that night. I told them great, but it has to be done before I came back the next morning. The next morning it was in and I guess it went in really easy and he didn't even fuss. He had this in until he moved to full feedings from milk.

The other cord coming out of his diaper is a temperature sensor. It would get loose periodically so we would take his temperature manually. One nurse couldn't get it on right so she covered the poor kid in tape to try to keep it in place. Then it wouldn't even work, so a couple of days later they had to peel all the tape off of his baby skin. So sad. He didn't have to wear this the whole time. I don't remember how long he wore it for though.

The rest of the cords coming off his chest monitor his breathing and heart rate. He wore these to make sure he didn't have apnea or bradicardia. He wore these the whole time he was in the NICU.

In this picture there is a pulse monitor on his foot. I was eventually able to put this on myself, but not quickly. Joshua wore the pulse monitor the whole time he was in the NICU. On his face you can see his oxygen cannula, and the giant stickers that held it on. He wore that until almost the end of the NICU stay when he was able to breath without it. If you look close you can see his feeding tube that goes down his nose into his stomach. He got quite good at taking out the feeding tube, one day he took it out between every feeding. He had the feeding tube in the entire time he was in the NICU too.

My Non Cuddly Boy

We were allowed to hold Joshua twice a day. I would hold him for 45 minutes to an hour in the morning and Brian would hold him for 30 to 45 minutes in the evenings. Most preemies will breath better when they are held by their parents and can have their oxygen turned down. Joshua would usually need to have his oxygen turned up. If we held him too long he would de-sat his oxygen. Sometimes holding him would be stressful, but we kept it up so we could bond with him.

One day I had held Joshua for about 45 minutes and the nurse came by and said she needed to go somewhere for 10-15 minutes and asked me if I wanted to put him back in the bed now, or when she came back. I told her I would wait until until she came back. 15 minutes went by and she wasn't back. Another 15 minutes went by and I started looking outside for another nurse to put Joshua back (we weren't allowed to stand up or move with the babies when they had IVs in them) After another 15 minutes I was able to grab a neonatalogist who put Joshua back.

That night when Brian came to hold Joshua, Joshua fell apart. A preemie doesn't fall apart like a normal baby does by screaming, they do it by breathing poorly. So after a few minutes we asked the nurse to put him back. She said he needed a bath that night and asked if we wanted to help. We did of course and proceeded to help give him a cotton ball bath (more on bathes later) He still was acting really tired, so we were trying to hurry. My parents stopped by to see Joshua not realizing that we would be there. We had to ask them to leave because Joshua was so stressed out.

The next couple of days we were very careful with Joshua and would only hold him for about 30 minutes at a time. Even after he got older and could handle the stress of being held better, we would still have to be sure to leave when we were done holding him, because having us in the room would make Joshua unable to sleep. When he came home he slept in his own room, but once or twice he woke up in the morning and we tried to put him in bed with us. He never could sleep in bed with us. He would get all wound up and want to play with us. Once in South Carolina Joshua woke up and I brought him to bed with Brian and me. Joshua started to cry and wouldn't settle down until I put him back in his pack n play where he quickly went back to sleep. We have let him sleep in his own bed since then.

PDA

One of the reasons they weren't upping Joshua's feedings at the beginning is because he had an open PDA. This is a duct that is open when babies are in the womb to allow blood to bypass the heart. It will close before birth, but with preemies it sometimes hasn't closed yet. This can make breathing and keeping enough oxygen hard for the baby.

There is two ways to treat a PDA the first is with some medicine and the other is to do a minor surgery which staples it shut. Even though the surgery was minor it still seemed scary to do that to such a tiny baby. They also would take him all the way up to Ogden to do the surgery, and we didn't want Joshua to have to make that trip.

They started Joshua on the medicine; the doctors were willing to do the medicine 3 times before resorting to surgery. The first time valve didn't really close at all. Brian and I started praying really hard that the medicine would work and that they would not have to do surgery. The second course closed the valve up most of the way, but not enough. More prayers were said and the third course closed the valve so we were able to avoid the surgery. They also started giving Joshua more to eat once the valve was closed so it seemed like a super double benefit.

We were really fortunate in the NICU the PDA was the scariest and biggest thing we had to deal with and it is a relatively minor problem. But it was a big deal to us.

Now for your viewing pleasure another NICU picture of Joshua just because I think he is cute.

May 15, 2008 Weighing 3 Pounds

I missed blogging yesterday because I got home really late, so today I will do two posts. I am not saying they will be long though.

On May 15, 2008 Joshua finally weighed 3 pounds. He had lost 1 ounce at the beginning and they weren't feeding him very much milk at this point so it took a while to gain the 4 ounces. Part of the reason they were not feeding him too much is because the babies have to show they can handle the feedings. They start feeding them a little bit and then slowly add more as they do well. They would feed him through the feeding tube and then 3 hours later come back and empty out his stomach through his feeding tube to see if he had digested the food. If the milk looked green they would throw it away, but if it the milk looked good, they would put it back in. It was weird to me, but fortunately most of the time he digested the milk just fine. They would also monitor Joshua's output. They would weigh his wet and dirty diapers and keep detailed notes about his diapers.

This is how Joshua looked at 3 pounds.

May 14, 2008 Eyes

I found some of the notes I took of the important events about Joshua in the NICU. The first thing I recorded is when we finally got to see his eyes. Even though they keep the lights down in the NICU, Joshua didn't want to open his eyes enough to look at Brian and me. But on May 14th he finally opened his eyes and looked and focused at both of us. He finally wanted to see what we looked like.

This picture was taken a couple of days later, but here are his open eyes.

Pumping

Brian is on swings this week and it is my goal to do a post everyday because I am getting behind in the posting and I am realizing that the new baby is coming soon. Today I am going to post about pumping because I spent a lot of time doing it.

When Joshua was first born he wasn't able to nurse. Babies at his gestational age hardly have a suck reflex, so they started him on a pacifier really early to strengthen his sucking.

Joshua obviously needed to be fed to grow and to gain the strength so he could eventually learn how to nurse so he was fed through a feeding tube. I will probably do another post about his feedings later.

When the nurse first brought in the pump I thought it wasn't going to work, but I decided to try for Joshua. The first day I didn't get enough to store to give to Joshua. The next day I started to get a little more and Brian worked hard to get every drop out of the pump pieces into the storage bottles. The next day I was making enough to feed Joshua myself. Eventually my body kicked it in high gear and I started making a lot of milk. I probably averaged in the high 30's of ounces made every day. (24-30 ounces is considered a full milk supply). A few times it kind of got out of control and I started making 40-45 ounces a day and I had to start trying to cut back on my milk supply.

I spent a lot of time pumping, it was basically a full time job for me. While I was waiting for my milk to come in I pumped 9 times a day, including 2 times at night. As soon as my milk came in I went down to 8 times a day and only once at night. Towards the end I was doing 6-7 times a day.

I also pumped in tons of various places. I obviously pumped at home. I pumped at the NICU, they had a whole special room dedicated to pumping. It felt like a barn to me, because we would go in to our own little stalls and hook up, and there was a freezer in there. I felt like saying Mooooo many a day I was there. After Joshua came home I bought my own pump, which was good because he wasn't nursing well. I ended up pumping and bottle feeding him when we came East, so I have pumped in many a state in the back of our car.

Storage was an issue, they only had so much room in the hospital, and we only had so much room in our freezer at home. Joshua was only eating 16 ounces a day when he came home and about 1 ounce a day at the beginning, so there was a lot of extra milk. I eventually decided to rent a meat locker after I filled up my freezer, my sister's freezer, and the extra space in my parent's freezer. I got some weird looks when I told the owner of the meat locker what I needed it for.

I got a locker that would hold about 250 pounds of meat. I filled it all up in the 2 months Joshua was in the NICU with excess milk that Joshua didn't need and I didn't dump. (I dumped quite a bit, mostly because I would forget to bring home bottles to store the milk and I couldn't do anything with it). Recently Brian and I bought a chest freezer that holds 250 pounds of meat, Brian was quite impressed when I told him I filled that up. Here is what our freezer looks like.

Unfortunately I had to throw most of the milk away when we moved east because I couldn't donate it because I was on blood thinners after Joshua was born, and the movers wouldn't ship the milk. That was really sad to watch it all go to waste.

Pumping was a lot of work, but it was worth it. Look at how much he grew. Here is is at the beginning.

Here he is right before we came home

And here he is after after right after I finished nursing him.

Love and Support

After Joshua was born I was amazed at the outpouring of love and support from friends and family members. My mom came and visited Joshua at the hospital several times each week. My mother in law flew in the day after he was born to see him. My sister Emily and my mom made several blankets to go over the isolette to keep out the light and to make the area seem more homey. I also recieved many emails of support from family and friends. I am going to compile them here in no particular order.

Karalee, This is Kim Wallace (Alpine Roofing Specialists) I heard about the news today and Mark e-mailed me some picts. How are the two of you doing? It looks like everything went somewhat okay, and it sounded like he is doing as good as can be expected!? I hope all is well, and I just wanted to also tell you Congratulations, let me know if there is anything I can do for you guys. Thanks, Kim P.S. He is a beautiful baby!

Congratulations, Karalee. I hope everything continues to go well for Joshua. Suzanne told me that you think he may be in the NICU until July? Please know that you all are in my thoughts and prayers! I love the pictures. He is absolutely precious!
Katie

Karalee, I am glad to hear that he is doing ok. What a scary thing! I am glad that there has been no complications or anything major, what a blessing! Let me know if you need anything, especially when he gets home from the hospital, if you ever want a visitor while Brian is gone, I'd be glad to come and help you out. Kristi Chase

Holy Cowl Karalee, don't you know babies are suppose to be 9 months. WOW!! You have had an experience of a life-time just with your very 1st baby. So glad that baby Braxton and Mommy (You) are doing so good. The pictures are Fabulous!!! He is so little but thank heavens for modern technology, huh!....and of course, the Power of the Priesthood!!!! Thanks for sharing everything with us!!--Melody Olsen

Aww, Karalee, he's adorable!!! Congrats! --Anna Cinsey

Karalee- Wow! What a surprise! I couldn't believe it when I read you had your baby. I'm so glad that everything is going alright. Congratulations and we'll keep little Joshua in our prayers. Holly Barlow

Oh my gosh what a surprise. I'm glad to hear he's doing so well. Keep me informed! Are you still going to have a baby shower?
Lindsey Olson

This is from Patrick's mother. Terry
Terry -
I absolutely cannot stop looking at Baby Joshua's pictures. The sight of that little guy lying there and still making it has to make you cry. I took the liberty of forwarding your note to Monty in Indiana, and to our kids, and my good friend, Peggy, who seems to spend most of her time praying.
It sounds like you and his parents went through a very traumatic time. Sarah had told us over the weekend about his premature birth, but I reallydidn't realize you were in Utah until I got the note. It is so very good for everyone that you can be there. I can't imagine the hours you have spent waiting and praying and trying to help.
Please know that Joshua Michael is being prayed for. I had mentioned at the house when Sarah was here that we would need to pray for him. The prayers will continue that he grows stronger and healthier in his little"nest" they have made for him. It sounds like you have a wonderful hospital situation and staff, which makes a big difference, not only in the care that he is apparently receiving, but in the trust you have in those caring for him. Karalee and Brian have been through a great deal,and I am praying for them too.
We are so pleased you included us in your message. When babies come,directly to a family, or babies we come to know about, it is a strong statement about God's presence, and offers everyone a chance to be moved in their hearts. Please continue to let us know how Joshua is doing.Take care of yourself as well. They are so very lucky to have you there.
God in heaven, please bless little Baby Joshua Michael. Strengthen his body, help him grow, keep him from harm and pain, protect him, nurture him. Bless his parents and those who come to his aid and comfort in these difficult days. Give them a knowledge of Your presence in their lives and his, and bestow them with strength and a strong bond to care for each other and the baby they have been blessed with. Let Joshua's life reveal Your great power and mercy.
That's my prayer for this morning.... Love, Pam

Robin is the secretary in The RS. Terry
Hi Terry
Wow, such a tiny precious baby! I am so glad that you are there withthem. I can't imagine what you are all going through - but am sure thathe has the very best doctors and care possible! I will pray for hisgrowth and strength to be more and more every day. Hopefully the timewill pass quickly and successfully, for all.
I was at a wedding just 2 weeks ago, May 2nd. The young man, the groom,was born 28 years ago, premature, weighing just 3 pounds and possibly asearly as your precious one. (The reason that I know that is because thefather talked about his son at the dinner the night before the wedding -and gave the story of his birth) He was their little miracle and is/wasperfect in every way. And that was 28 years ago, and the equipment andeverything is much more advanced now! I feel strongly that your preciousbaby,Joshua, will be perfect in every way and you will be at his weddingsome day. Sending you my love and prayers!
Love
Robin

Thank you to everyone for your love and support. If I didn't include something that you wrote to me I appologize, it just means I was unable to find it after two years, I know I appreciated at the time.