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.