Thursday, October 29, 2009

Home in Twin Falls

Marilyn:

I'm home again in Twin Falls. I was able to attend Brady's Halloween Party at school. James came with me and Bryan stayed home with uncle Blaine to take a nap. I love to be home with my boys, it can get a little overwhelming at times. I must keep reminding myself to enjoy them while I'm home with them and not worry about the housework.

David is in Boise with Jackson until Saturday.

The Doctor called today to inform me that the medication to help open the airway in his lungs caused his heart rate to get too high. They started him on a different medication that shouldn't elevate his heart rate as much. He is up to 25cc for his feedings, including the supplements added.

I'm off to go do some cleaning (the kids are sound asleep).

Patient Care Conference

Marilyn:

On Tuesday we had a patients care conference with Dr. Scott Synder to discuss Jackson's conditions and what to expect. Some of the information was scary. He will have some obstacles to overcome for being born at 25 weeks. With regarding the brain he is not out of the woods yet. In a week Jackson will get another head scan to check for PVL (perventricular leukomalacial ). This is basically where hollow spaces form when brain tissue around the ventricles softens and dies away, forming a cyst on the brain and nonfunctional brain tissue. If this occurs, it will affect his gross motor skills that could lead to cerebral palsy or some limited functions of the arms or legs. There has been no indication of this forming, but the doctor said he's at a higher risk for this because he was born with an infection. I almost wish I didn't know about this until he did have this problem. The doctors want to inform us of all things and they may not even occur, but we need to be aware of what could happen so we can be prepared. I believe everything is in the Lords hands. I hope it is not in His plan for Jackson to have a disability. But I will trust in Him and have faith and I know anything is possible with our Heavenly Fathers help. I believe in miracles and I will continue to pray for more. I know he's a special little spirit with a great purpose in this life.

Other concerns Jackson may have to face is hearing loss. They will check his hearing before he leaves the hospital and at 4 to 6 months. He may be at risk because of being on certain antibiotics.

Jackson is also at risk for Retinopathy of prematurity. This can lead to blindness and other vision problems. Blindness is rare and the ophthalmologist will do eye checks to determine if there are any problems developing. Being on oxygen for so long can lead to eye problems and laser surgery can be done to correct some issues.

His heart is doing well and there should not be any future problems

His lungs need to mature and develop. On Wednesday Jackson was put on a medication to help open the lungs more, to help prevent his oxygen levels from going down.

Overall he is doing well. I love to hold him, he's such a snuggle bug. Thank you again for all your prayers and all the many acts of services. We feel truly blessed as we go down this journey.

Tuesday, October 27, 2009

Marilyn:

I came back to Boise on Monday to be with Jackson. Yesterday I was informed that I can hold him twice a day now, while wearing a cannula instead of the Cpap. Jackson had quite a few desaturation spells yesterday where he's holding his breath. His stomach has been full of air. He was given a diuretic to help with his stomach. Last night I held him for almost 3 hours and he did great!

Jackson now weighs 2 lbs 10oz.

This morning I held Jackson for only about an hour because of his oxygen levels kept going down. He's a little sweetie, he's been opening up his eyes more to look around. The nurses tell me he looks like a clone of his brothers. He has the same hair line as the rest of the Tarkalson boys.

Today I will be attending a conference with some of the doctors and others who are caring for Jackson to inform me on Jackson care and to answer any of my questions. I have been very pleased with the staff at St. Luke's Hospital, everyone has been so nice.

I miss my boys at home. I will be leaving tomorrow evening to be home for the Halloween parties. Brady's is on Thursday and James is on Friday. They are excited to be vampires. They have been watching too many Scooby Doo movies. Then David will come to Boise on Thursday after we get our H1N1 shots (I'm a little nervous about getting, I'm hoping it is the preservative free one). David will stay through Saturday and then he'll fly to Pittsburg for a week of meetings.

Thank you all for your prayers and support. The Lord has been blessing us with miracles everyday. Jackson has such a strong spirit and I'm thankful he was sent to our family.

Sunday, October 25, 2009

David:

Doctor Snynder called today with an update on Jackson. Jackson will start receiving a protein supplement three times a day. Recent research has shown that preemies who receive the protein supplement have more consistent early growth which results in less negative issues with brain development. They usually do not give the supplement this early in a preemies life but since Jackson is at a full feed volume they want to see how he will handle it.

The doctors have adjusted Jackson's CPAP to increase the air pressure due to increased desaturation issues. Jackson has started receiving a vitamin D and iron supplement because he is anemic. He will receive this daily until he is 9 months old.

Dr. Snyder informed us that Jackson would likely be in the NICU at least another 9 weeks. At a gestational age of 36 weeks Jackson will receive a PVL test to see if cysts and/or non-functional brain tissue develop on his brain (these are possibilities for babies born as early as Jackson).

Dr. Snyder also said Jackson is doing exceptionally well for a baby born as early as he was.

Saturday, October 24, 2009

David:

Jackson had a cannula on him for the first time today. He wore it while I held him from 10AM to 12PM. His blood oxygen content remained in the 90's the whole time. The doctors said he could be on it twice a day to see if he will tolerate it for a few days. The nurse informed me that he is ready to be moved out of the omnibed to an isolet but since they do not need the omnibed right now they were just going to keep him in it. I asked what the criteria were for determining when a baby is ready to change beds, the nurse said it was based on the babies stability.
David:

Jackson now weighs 2 lbs 8 oz., up 4 oz from his birth weight. He receives a full feeding of 21 ml of milk with a calorie enhancer added via a feeding tube every hrs to give him a total of 24 calories per feeding. This feeding volume and calorie level is considered the amount he needs and thus his PICC line, through which delivered nutrition directly into his blood, was removed earlier this week. Jackson previously had a grade 1 brain bleed on both sides of the brain; the brain scan yesterday showed improvement. The doctors informed me that 95% of brain bleeds occur during the first week after birth. They plan to do another in 2 weeks to follow up. The doctors are not concerned about his fluid in the lungs since other signs of his respiratory system are good. They will start testing him on a cannula breathing system starting today while he is being held. The overall report from the doctor is good and they were very encouraged by his progress and condition.

Thursday, October 22, 2009

Marilyn:

Today Jackson has been having a lot of desaterations. It was scary watching the numbers on the machine go down to the 50's, when the machine starts going off if it goes under 85. He has a new room, but now whole set of new nurses working on him. It can get frustrating being at the mercy of the nurses. They have been great so far, it's just hard getting use to new ones and a new schedule.

David's sisters Megan, Becky and sister in law Ashley are coming down tonight to hang out with me. It will be nice to have some company. It is very thoughtful of them to take the time to come and be with me during this hard time.

He's a sweet little boy and I look forward to bring him home.

Tuesday, October 20, 2009

Marilyn:

Today Jackson is at 22 cc of breast milk. He lost an ounce, he now weighs 2 lbs 4 oz, his birth weight. Last night, I helped give him a quick bath, where I wipe him in his bed with a warm soapy rag. He didn't seem to mind it too much. He gets a little feisty at times when he's getting poked and prodded every three hours. The nurse today said that he managed to pull out his feeding tube 3 times today from his mouth.

I finally reached David's high standard of holding Jackson for 3 hours today. He tolerated it well, just a little twitchy from his immature nervous system.

I will be going home tonight after I meet the night staff. I'm excited to see my other boys, but I feel bad that Jackson will not be held or seen by us on Wednesdays. When I start feeling my energy levels go up, I will go and hold him early Wednesday morning and then head home.

I feel so blessed to have four boys. I feel Heavenly Fathers love for us everyday. He has blessed us with many angels who are taking care of Brady, James, and Bryan. I'm so thankful for his plan that families can be together forever. I started listening to the conference talks that David downloaded on my Ipod while I pump every three hours. The messages have given me much needed strength. When I feel like I can't do it any more, Heavenly Father gives me the strength I need to keep moving forward, mostly through others encouraging and giving me support.

Monday, October 19, 2009

Marilyn:

I arrived in Boise today. Jackson's pick line has been taken out. He is on full feeds, 20 cc and an extra 2 calorie enhancer. He seems to be handling his feedings well. The nurse says his stomach has a lot of air in it from the Cpap machine. His O2 are still high, but his red blood cell count seems to be fine. They are not sure why he's needing more O2. His chest x-ray shows fluid in his lungs and it may be from the heart valve having a small leak in it.

I'm looking forward to holding him at 3:00.

Sunday, October 18, 2009

David:

Update 8PM:

The second chest x-ray has not yet been examined by the Radiologist. That report should occur by morning. Jackson is currently on his lowest O2 level of the day (31%) using the CPAP. He is currently eating 16 ml of milk per feeding and seems to be tolerating his food well. The doctor has said that if he keeps doing well with his milk digestion he could have his PICC removed in 4 days and will be receiving all his calories through feed. A PICC is similar in purpose to an IV; it is inserted in a peripheral vein (the basilic vein below the elbow was used for Jackson) and then threaded through increasingly larger veins to the heart until the tip rests in the distal superior vena cava or cavoatrial junction. A PICC can be in place for a long period of time and serves as a port for medication and nutrition insertion into the body.

Marilyn leaves tomorrow morning for Boise. She is felling well enough to drive by herself.
David:

Jackson is doing well overall. The doctors have increased in 02 concentration. They are not sure why he is needing more; his tests have come back not showing an infection. A chest x-ray showed that his lungs are a little "wet" but do not show a full blown infection. A second x-ray was ordered to double check. Ryan Stephenson, an fellow Salmonite came to the hospital bearing a nice care package from him and his wife. Ryan and his wife had twins at 25 weeks and spent over 130 days in the NICU unit. Ryan assisted me give Jackson a priesthood blessing. We truly appreciate there gesture of support along with everyone else who has served us.

Friday, October 16, 2009

Marilyn: (report from David)

David went to Boise today (Friday), and he reported to me that Jackson is doing well. He is up to
12cc for his feeding, tolerated my milk well. David held him tonight for 3 hours and Jackson loved it. I told David I couldn't believe he could hold him for that long without having to go to the bathroom and that Jackson could handle it so well. David said, "it just means he will like me more when he comes home."

Again, I'm in awe at how blessed we are. Jackson is doing well so far and I'm just amazed at all the wonderful people who have helped us. My mother law stayed with me longer to help me get through my struggles and she has been such great help. She is vacuuming my house right now and it is almost 11:oo pm.

Thursday, October 15, 2009

David's mom and I arrived in Boise yesterday around 5:00 p.m. I felt like I didn't want to come because I was leaving my other three boys. But, once I saw my little Jackson, I was glad that I came. The cardiologist came on Wednesday to look at Jackson. He said that he was doing well and that he wanted to have him weaned off his blood pressure medicine because it was going down.

Today a nurse came up to me and asked me if I wanted a special packet sent to mom's with micro preemies. It didn't hit me until she said that, that I actually have a micro preemie. It sounds so scary.

I'm feeling very tired today and looking forward to coming how again tomorrow to see Brady, James and Bryan. David will head to Boise when I get home. Soon it will feel like I don't have a husband any more, when I'm coming home, he'll be heading out.

Thanks to everyone who has been praying for our little Jackson and for all of you who have been taking care of my boys. I couldn't do this without all of you. I can feel calm, knowing that my boys are safe.

Tuesday, October 13, 2009

It was nice to be home Thursday through part of Sunday. I hated leaving my boys, especially my little Bryan ("Bry, Bry"). He kept crying and saying he wanted to go and of course I was crying too. I can't even write about this without bringing the tears on.

We arrived Sunday after 5 to see our little Jackson. We were told he was doing well, still having high blood pressure, but being strong. He is down to 1 lbs 14 oz. The doctors said it is normal for them to loose 10% of their birth weight after the first week.

We got to hear him cry for the first time on Sunday, it was very pitiful. The nurse said he is a feisty little guy.

They started feeding him my breast milk on Sunday night and is tolerating it very well.

One of the nurses kept encouraging us to hold him. David and I felt very nervous about holding him until we talked to the doctor to make sure it would not cause any problems with his brain, causing bleeding. On Monday the doctor told us it would be good to hold Jackson and that his brain scan results showed no bleeding on one side and only a level one bleeding on the other side.

I got the courage to hold him, they even had me get him out of his incubator, which scared me to death. I was surprised that we could hold him when he is so small. He did great, he seemed to enjoy it and handled it very well. Bryan didn't handle his first holding, he kept desatting. My hand went numb as I was holding him and David stayed by my side to make sure I didn't fall asleep, for fear of not supporting his head.

A heart specialist is coming from Portland on Wednesday to consult with the doctors about his high BP. Jackson started a new medication on Monday that seems to be helping to reduce his BP.

David held Jackson for the first time today. He looked so natural doing it. He is a great dad, and he just loves his little Jackson. I will say he looks like an old man, and David will say, "no he is beautiful."

I got home today around 3:00 pm and I felt like it was Christmas today, because I couldn't wait to see my kids. I'm struggling with going back tomorrow. David's mom will be coming with me, I'm excited to spend time with her, she is a very special lady.

Thanks for all your prayers and support! The Lord is blessing us so much. I know things will work out. It will be a great celebration when he comes home.

Saturday, October 10, 2009

Marilyn:

Jackson was born on Sunday October 4th at 2:00 p.m, weighing 2 lbs 3 oz. Right as the last session of conference was starting.

At 20 weeks to prevent me from losing the baby, Dr. Allen did surgery to sow my cervix shut. I was then put on bedrest for the rest of my pregnancy. I was only allowed to get up to go to the bathroom. My friend Joann Davis and many others put together a schedule to provide someone to always be at my house while David was at work. I felt so blessed with all the ones who helped my family while I was on bedrest. The house was always kept clean, the laundry was done, the kids were entertained and meals were prepared. I thank Heavenly Father every night for the ones who have helped our family.

On Wednesday I called the doctor with some concerns. They had me come in that day to do an ultra sound. Everything looked normal and I was sent home for my bedrest. Then that night I had contractions for 3 hours. I didn't go to the doctors because they stopped and I assumed they were Braxton Hicks. Then Thursday night October 1st at midnight again, I had contractions. But this time I knew they were serious and after 2 hours we headed to the hospital.

I was given medication to stop the contractions. The medicine was the worst thing I had every experienced. It was hard to breath, I felt like I was having a heart attack and it made me very nauseated. Around 10:00 a.m. on Friday they finally stopped. They wanted to monitor me for a few days to make sure I didn't go into labor again. My water never broke and my cervix was still shut. The doctors decided to hold off sending me to Boise where if I did have a 25 weeker, they could handle the care of the baby. I was given two shots of steroids to help the babies lungs in case I went into labor. I was given Demerol for the pain and I was very greatful for it. It is my favorite drug when in labor.

Then early Sunday morning I started bleeding again and having contractions. I was given more drugs to stop the contractions. My body did not handle the drugs too well, I was vomiting and having trouble breathing. I was put on oxygen and sent to Boise on a plane.

As I was being carried onto the stretcher to the ambulance, I saw that it was snowing. I was flown on a plane to the Boise airport. Heavenly Father was blessing me so much during the flight. I felt very calm and His arms surrounding with His love. I kept thinking, "wow how can I be so calm right now." I was in completely amazed and thankful for how well the medical team transported me. They were so kind to me and did a great job.

When I arrived at the hospital again I was given drugs again to stop the contractions. My blood pressure was getting seriously low. The doctor decided to test my amniotic fluid for an infection. Sure enough, I had 2 infections in my fluid. I was then prepped for a c-section. The doctor told me the baby was very sick and that there was a chance that he may not live. With a prayer in my heart I still continued to fill comforted by my Heavenly Father.

After they gave me the spinal, the doctor started cutting. I started screaming that I could feel it. It was a very scary feeling. They had to wait an extra 10 minutes before they could do the surgery. I've had 2 c-sections before and this was the only one that I felt so aware of what was going on. It was a long surgery, they doctor said because the baby was so small, it would be difficult to get him out and that they may have to cut both directions. But thankfully they didn't have to.

After they pulled the baby out, I could feel him leave me and I felt very sad. David was there with me to tell me that he was born right at 2:00 p.m.

After the surgery the doctor kept saying that I might have internal bleeding and that they may have to cut me open again. My body wasn't doing well. My blood pressure was extremely low, my oxygen wasn't good and other symptoms were occuring that had the doctors concerned. I prayed and prayed that my body would recover and that I would not have to go under the knive again.

Finally I was sent back to my room after 3 hours. I was monitored very closely that night. They did my vitals every 45 minutes. I was in bad shape, with low BP and low oxygen and a stomach full of gas. I was put on oxygen and antibiotics for the infections.

I was blessed to have such wonderful nurses and an intern that checked on me constantly telling me she was worried about me.

My mind is still blurry with everything that happened in the hospital. My mom came on Tuesday and stayed with me until I was released on Thursday October 9th. It was fun having her there with me. She was a great help!

On Wednesday the doctor came to see me and recommened that I have a blood transfusion. I was so pale and week and they thought I could benefit from one. My count was at a 22 and the normal is 32. I told them I wanted to wait until the next day to make that decision.

But by Thursday I felt a little better and the doctor thought I would do fine without one.

It was very hard to go and see Jackson for the first time. I would much rather trade him places, be on bed rest and not have him be going through all this and having pain. It just broke my heart to see how little he was. But I knew that he was a special spirit that needed to come to this earth, even under such hard circumstances. I knew Heavenly Father and His angels were watching over him and protecting him. I feel blessed to be able to be his mom. It will be a long road, but we will get through it because we have so much support from our ward, family and friends. My faith will continue to be tested and my testimony in God will be strengthened.

I was so excited to come home and see my boys. I tried hard not to look back at the hospital as we left the parking lot. Of course I did and felt very sad to leave him there all by himself.

When I came to the front door of my house, Brady opened the door and gave me an immediate hug. James and Bryan followed behind and gave me a gentle hug. I was so happy to see them. Brady wanted to read me books, he pulled out all his school books and read to me like crazy. James was chattering non stop about all the things he had been doing and about who he was playing with while I was gone. Bryan kept saying, "baby at the hospital."

Bryan has been staying right by my side nonstop since I have been home. He constantly comes up and give me hugs. He's such a sweetie. It's hard to imagine that he was born at 29 weeks and we went through the same thing, except he was in the Twin Falls NICU.

I realized even more how important our families are. That I just need to let the little things go and throw out the schedule at times and just sit and enjoy my children without thinking about the next task of the day. I've been enjoying listening to Brady and James chatter to me about everything that is on their minds.

I have a great husband who is my rock. He was so calm in the hospital and gave me much strength to endure all this.

I'm leaving tomorrow for Boise, I'm excited but torn to leave my three little boys. I will miss them so much. Thanks again to all of you for your prayers, support and service. Wish me luck!
David:

Marilyn has been home two days to recover from her surgery. She is doing better but will need someone to help her get around until she can drive again. We will go Boise tomorrow after church. I will stay with her until Tuesday. My mother will be with her from Wednesday to Friday.

We miss Jackson and look forward to seeing him again. The reports from the doctors have been good. He has had two brain ultra sounds and he has a Grade 1 brain bleed rating, which does not have the doctors too concerned at this point. They will give him another one tomorrow. His blood pressure has been high and this is not ideal for the fragile capillaries in the brain. The doctors suspect that the high blood pressure may be due to kidney immaturity and/or the hydro cortisone given to Jackson to raise his blood pressure just after birth. They think his blood pressure will come down over time as the kidneys mature and the hydro cortisone is metabolized and leaves his system. He is on the CPAP breathing machine at 21% O2 and is tolerating it well.

We have been doing lots of fasting and praying for Jackson. I know that Heavenly Father is blessing Jackson and us in many ways.

Friday, October 9, 2009