Time to write again- Jackson is 9 lbs 10 ounces

I've been so busy with my 4 boys that I haven't taken time to write in the blog. Jackson is doing so well! He continues to have high blood pressure and calcium deposits in his kidneys. We go to Boise once a month to see the kidney specialist. It's kind of fun to have an excuse to go to Boise again. I don't miss being their in the hospital though. We have been so blessed!

Jackson is a great nurser. It was a long struggle, I thought he would never learn. Now I struggle with him to take his bottle for his supplement. He will sometimes gag and gag when I put it into his mouth, because he would rather nurse.
He is still on medicine for his blood pressure and reflux. He hates taking his reflux medication. He will gag and gag when I try to give it to him. I few weeks ago I tried giving it to him and he cocked his head back and the medicine went down his throat wrong. He stopped breathing and looked all pale. I was scared and thought I was going to have to call 911 and then I couldn't find my cell phone. He finally coughed and threw up his medication. I still feel uneasy when I give this medication to him. I've tasted it and it is horrible.

He is getting so close to smiling. He has cooed a few times, it's so cute. He's such a sweet little boy. I call him my little Jay. His daddy loves to hold him and do the supplement feedings at night. They are still hard on his stomach. Giving him lots of gas and constipation.

Jackson loves to look around and be carried in the baby sling, (I call it the happy pack)so he can be next to me. We could use some more sleep at night. Jackson likes to sleep all day and stay up at night.

I'm trying to keep up with the house work. I was washing my kids clothes and found carrot sticks in James pants. All this time I thought he was eating his carrots and instead he was putting then in his pant pocket. What a little stinker.

David is out of town this week in Denver. We will miss him.
Bryan turned three today. We had his birthday party yesterday with my family. I made him a dirt cake with worms in it. He thought that was so fun! He kept saying, "I'm the birthday boy." He's my little sunshine.

Jackson got his 4th RSV shot today. We are hoping to keep him healthy. James, Bryan and David have been sick. I got sick with Mastitis, but we are all feeling much better.

Jackson goes to PT once a week. We are trying to work on his neck muscles. He has a flat spot on his right side of his head from laying on his back too much in the NICU. We are hoping he doesn't have to wear a helmet.

Home for 6 days- Amazing Jackson

Jackson has done so well at home. He has overcome so much for being born so early. His last brain scan showed that his level 1 brain bleed was resolving and that there were no other issues developing. He still continues to have high blood pressure and is taking medication for it. I will be taking him to Boise next week (Wednesday) for an appointment with the kidney specialist regarding his BP. On Friday he had an eye exam with good results.

I took Jackson on Thursday for his first appointment with his pediatrician. He weighed 7lbs 5 oz. The doctor was impressed with how well he was doing. She didn't seemed too concerned.

He is becoming more and more alert. He loves to look around and eat. It's hard to sleep at night because he grunts and groans all night long. We have to give him glycerin shots every 12 hours to help him have a bowl movement. He's taking 3 different medications that I'm struggling to give him without them being spit out. He's not a fan of his medications. He makes the best faces when I try to give them to him. If I put it in his milk, he will not suck it down. If I give them after his feeds he spits them up.

I had a lactation specialist come over to my home to help give advice with getting Jackson to nurse. She was wonderful, she gave me some good advice and tips to help Jackson be more successful. If anyone needs help with this, I highly recommend Amy Peterson.

The boys were so excited when we came home. It was such a neat moment to watch how they reacted around Jackson. They have been so gently to Jackson, what great big brothers.

I'm so grateful for all the help that my family has offered to us during this time. My mom has been coming over after work to help fold the laundry . To watch the kids so I can go grocery shopping, to hold the baby and talk with me for support and comfort, she's been so great! My brother Blaine comes over and helps entertain the kids and do dishes. He's been helping me since I was on bed rest. Thank you little brother. My dad still continues to pickup James from Preschool and doing things around our house, like put up our new blinds, change the batteries in our fire alarms . Thank you dad! Thanks to all the friends that have been bringing us meals. Thank you Lisa for continuing to take the boys to school. I'm not ready to Jackson out into public yet. Thank you to my husband for always staying so positive and supporting me. He's a great dad and husband. I'm so grateful for all the nurses and doctors at the NICU. They were amazing. I'm very grateful for the many blessings the Lord has given to our family. He has been my strength through all this and has give me much comfort and hope. Jackson is our little miracle from Heavenly Father.

I met some neat families at the NICU and Ronald McDonald house that I will miss. I met an amazing family whose daughter was born at 23 weeks and passed away after 9 days. Please pray for the Swenson family. I will never forget them and my heart aches for their loss.

I went and bought a larger freezer yesterday to store all my breast milk. I need to get to bed, I average 4 hours a night since I've been home.

January 4th- 91 days - 7 lbs 2 oz- Going Home Today!

We are going home today and taking Jackson with us. I'm excited and nervous, I'm still feel like it's not real. I'm leaving my second home and finally coming home to my family with our last boy. What an amazing journey it has been.

Jackson passed his hearing test and care seat test yesterday.

Rooming in night #2 - Possibly going home on Monday!

Jacskson gained weight last night and ate all his feedings. We are looking at going home as early as Monday. David and I need to take a CPR class, Jackson needs his last head ultra sound, a hearing test and car seat test. Jackson is doing well, he's a perfect little baby. What a miracle he is. I'm trying to type this thinking he's going to sleep in his crib, but he's looking around instead. It will be wonderful to go home and be with my family again. It will be another change that I'm excited for and nervous about. My boys have so much energy. I'm so grateful for all the blessing the Lord has blessed us with. Ok, Jackson is calling for me to hold him or maybe feed him.

Feeding tube out- Rooming in with baby

Great news! Jackson's feeding tube was taken out this afternoon. The doctor asked if I wanted to room in with Jackson tonight to see how he would do eating orally. I called David to come to Boise to be with us. Thank you mom and dad for agreeing to watch our kids this weekend. My mother has been so wonderful, she has been watching my kids through the holidays. Thank you, we couldn't of done this without you.

I'm so glad David is here with me. He's such a good dad and he loves his boys so much. He's more relaxed than I am and so far since we roomed in at 6:00 pm he has taken 100% of his feedings. We switched the bottle from the breast flow to the slow flow and he is doing much better. This bottle doesn't require him to work as hard to suck the milk out. I haven't been trying to nurse Jackson for the last two days because I have developed an infection. It's been painful even to pump. I just want to get him home and then I will work on breast feeding when we get home. He doesn't get worn out when drinking a bottle and then we know how much milk he is taking in. He has to get 166 ml in the next 12 hours to keep his feeding tube out. He looks so cute. After his 7:00 feeding, Jackson was awake and alert for two hours just looking around while his daddy held him. I'm so grateful David is here with me. I think if I had to do this alone I don't think Jackson would do as well with his trial run because I would be too nervous. Now, I know he will do well because my David is here to help.

Getting Close to Going Home (I hope)

I'm being told that it is getting closer for Jackson to come home. I'm trying not to get me hopes up, but it's hard not to. On Wednesday I was asked to stay the night in a room in the NICU, so I could feed Jackson in the night. The Doctor wanted to see how he would do by letting him go 3 to 4 hours for each feed and see if he would wake up hunger and do all his feeds orally. Jackson stayed up from 7:45 p.m. to 10:30 pm just looking around. He was being so cute! But then he was too tired for next 2 feedings and didn't do as well. I was wiped out by 8:00 a.m. the next day (New Years Eve). I only got 3 hours of broken up sleep. The PA yesterday said he may be getting his feeding tube taken out today and then I would room in again tonight.

I've learned so much from this experience. I've met some amazing families that have babies in the NICU. I just met a family with a baby born at 23 weeks gestation. My thoughts and prayers are with them as they go down this long emotional journey. Jackson is grunting and groaning, I better go hold him now.

85 days in the NICU 38 weeks gestation

I'm getting very anxious to go home. I miss my boys and husband. I'm so ready to go home, it's been a tough week and it's only Monday. Jackson needs to eat more orally before his feeding tube can be taken out. He doesn't like to nurse, so I've been giving him the bottle to help increase his % of feeds orally. Once he reaches 80% his tube will be taken out and then this will get us closer to going home. I keep telling myself, I've been here 85 days, what's 14 more days.

Jackson is a feisty little guy. He's always grunting and groaning. All the fortification that is added to his breast milk is hard on his stomach. I'm off to go to bed.

Merry Christmas

I need to catch up on all that has happened. Pictures will be coming soon. I left my camera with David at the hospital. I decided to come home today to get things in order from Christmas. Put the tree and decorations away and be back to Boise on Sunday. David suggested that I go home while he stays with Jackson until Saturday night. I think he was relieved to not have to take home three cranky sleep deprived children back home.

Jackson was taken off his caffeine on Monday. So far his heart rate hasn't been dropping. His crib mattress is flat now, before it was inclined to help with the reflux. He's being prepared to go home soon. He now weighs 6 lbs 11 oz, he's a big boy! His blood pressure is borderline high and his blood pressure medication dose has been increased. The renal level lab results are back today, still waiting to hear from the doctors. The nurse told me that the levels were in the higher range. Still learning to eat and then hopefully go home some time in 2010.

David came to Boise with the boys on Wednesday. I was feeling very discouraged earlier this week and wanting my family back together again. When I saw David pull up in his car with the boys, I grinned ear to ear, filling so happy to see them. They were all smiling and happy to see me as well. It was a great moment to hug them and welcome them to Boise to be with me.

We all stayed at the Ronald McDonald house (RMH) until Christmas Day. We had some late nights and no naps with the kids. James kept saying he wanted to go home. Bryan wouldn't let me out of his sight, he kept saying, "mommy stay."

The staff at the RMH house made Christmas for our family special and a memory we will never forget. Santa and Mrs. Clause came to hand out presents on Christmas Day. He was the real deal. He had a real white beard and the spirit of Santa. The kids were thrilled. We will always be eternally grateful for the support and service given to us from the staff at the RMH. It is definitely a great place to send donation to that are used for a great cause. Our family has been so blessed from the community support of Boise offered through the RMH. I was told that they go all out on Christmas Day for their guest and they definitely did. I felt relieved to know that I could just focus on being with Jackson at the hospital and not have to worry about preparing for Christmas Day. Our family has definitely been on the receiving end this Christmas and I have been deeply humbled by all the generosity that has been given to our family. Hopefully next year we can be the ones giving.

We had a very special elf left us a present on our door step on Saturday evening. Thank you for your generosity and for thinking of us. The kids will have so much fun using it! We have been so blessed this year. Merry Christmas!

2 Videos:

1) Taking a Bath
2) Eating

Waiting to go home!

I'm getting anxious to go home. I know we have a good 2 weeks to go, but I miss my family and I'm getting restless of the NICU. I wasn't going to go home until Jackson comes home, but I miss my kids so much that I'm going to come home on Thursday evening for the weekend, and David will go and spend time with Jackson. I was worried he wouldn't learn to nurse if I leave for the weekend, but he still has a long ways to go and I'm curious to see how many bottles he can take when David is with him. He still get's most of his feedings through the tube. Today he is going to be seen by the kidney specialist.

71 days in NICU- 36 weeks gestation 6 lbs 1oz-

Jackson growth chart has been impressive. His preemie clothes that I finally brought last week no longer fit him. Since were not having any more children, I'm going to donate them to the hospital. He's getting to be such a big boy! He's still having some high blood pressure. Since Saturday, Jackson has been doing so well. He hasn't been having any desats (oxygen levels drop) and his reflux seems to be getting less and less each day. Today he was fed 1/2 of his feedings in the tube after he nursed and then at nights he will be offered the bottle. Jackson has come a long ways, we are so blessed!

Today the doctor said it will be at least 2 more weeks before we go home. I can't wait, I miss my family so much.

Kidney Stones

My sweet little Jackson has several kidney stones. The results from his kidney x-ray showed that his kidneys were developed normally, but with kidney stones. Poor little guy. The doctors are going to consult with the kidney specialist from Portland who is coming on Wednesday. Jackson is still having high blood pressure and the known cause is still puzzling to the doctors.

He's doing well today. Learning to nurse and having very little dessats. Last night the nurse gave him 2 bottles and he finished all of it. What a trooper!

High Blood pressure and more tests

I went home yesterday for a quick trip to see my boys in Twin Falls. I miss them so much. I returned back to Boise today to avoid the snow storms that are coming this weekend. I plan on staying here until Jackson goes home. I need to be here to nurse him, he's still learning. I'm not sure how I'm going to handle this emotionally, being away from my family for so long. David will hopefully bring them to see me on the weekends if the weather is good. James is having a hard time having me gone. He starts to cry when I tell him I'm leaving to go back. It brakes my heart, I sure miss them. I miss holding my little Bryan and singing to him at night. I have to keep reminding myself, this is only temporary and I will be home soon. I wanted to spend Christmas with my family, but it looks I will be here in Boise with Jackson.

Jackson has been having high blood pressure again. The systolic pressure is reading too high, as high as 114. They did an ecogram on his heart and the results were normal. They did an x-ray on his kidneys, and I will know the results tomorrow. The doctor consulted with a specialist from Portland to determine why Jackson is having high blood pressure. He ordered lab work for Renin Assey level and for Jackson to be on the medication Spironelactone (a diuretic). The doctors are trying to determine if there is something going on with his kidneys.

I know Jackson is going to be fine. He has received priesthood blessings that have given me much comfort. I know the Lord is watching over him and Jackson will grow up and live a normal life. I'm so thankful for him, he's such a sweetie. He is doing so much better today. I was actually able to hold him while his oxygen levels stayed normal. I need to post more pictures, I keep forgetting to bring my camera with me to the hospital.

5lbs 10 oz

Jackson is still having a hard day. He's had several Brady's (heart rate drops), and his O2 has been dropping. I've been very worried about him. The doctors are doing more tests to see what is going on. I hope and pray that he will do better soon.

Back on the cannula

Jackson has had a rough week since Sunday. He's been having high blood pressure and constant dessating. When I was holding him during his feedings he's grunting and groaning and having lots of refluxing. Poor little guy, he's been so restless and acting very uncomfortable. The doctors are trying to figure out what is going on. He had a chest x-ray done, some blood work and a urine test. So far clinically he's fine. I was told by one of the doctors that he may not being feeling so well because of the vaccinations he received on Sunday. His oxygen levels where dropping to low numbers and his heart rate was dropping, so he was put back on the cannula this morning.

I was also told today by one of the doctors that Jackson still had a long ways to go before he goes home and that he wouldn't be coming home for Christmas.

Jackson's brothers are excited for him to come home soon

Today Marks 60 Days in the NICU

David,

The doctor informed us today that Jackson will receive his third blood transfusion. His red blood cell count is low and he has been de-sating a lot the last couple of days. His lungs are mature so they will not put him back on oxygen. The doctor has also increased his caffeine dose due to his increase in body weight.

I will travel to Boise tomorrow morning and spend the weekend.

Heart and Eye Concerns

Marilyn:

I talked to the Doctor today and she informed me that the valve in Jackson's heart is slightly opened, which may be causing his heart murmur. The doctors will consult with a cardiologist and do another echo gram to determine what needs to be done. This may clear up on his own by 3 to 6 months, or he may need medication or surgery. Jackson is doing well clinically, so hopefully this will not become an issue.

Jackson had his eye exam today. He has ROP, zone 2 level 2. This means his risk has increased. We will continue to pray that his eyes and heart will develop normally. I feel like everything will be fine. He is in the Lords hands.

Jackson weighs 5 lbs 3 oz today!

I miss my boys and look forward to seeing them tomorrow evening.

Almost 5 pounds

Marilyn:

I'm back in Boise to see my sweetie! I was informed today that Jackson has a heart murmur. I was told by the NP that they are not concerned about it at this point, but they are going to keep an eye on it to determine what it's indicating. He'as almost 5 pounds, I'm sure he will be there by tomorrow. He's doing great so far! I hope and pray he will be home for Christmas.