Eyes and Bottles

1 month, 3 weeks, 4 days
Gestational Age: 36 weeks, 1 day

Eyes: Eden had an eye exam with the retinal surgeon today, both Scott and I lost sleep last night thinking about and praying that she won't have to undergo laser eye surgery for her ROP. The MD called and so far the ROP has not progressed any further- no laser surgery yet. We are hoping that it will regress and her eyes will mature naturally, according to Dr. H this is very possible. We will continue to pray that she does not have to undergo surgery.
Babies this young can make out shapes and some blurry colors but for the most part not the details of your face. As you can see from the pictures, Reagan has enjoyed looking at herself in the mirror and especially looking at her Dad! Such a pretty girl with pretty eyes...

Bottles: Eden has bypassed her sister and started taking a bottle. This is so amazing to us and we're thrilled to be able to feed her this way. She can only handle this once a day for about 30 minutes at a time, but she's doing very well. She still has her NG tube and is getting most of her feedings this way. It didn't take her long to figure out how to swallow but she certainly has to take a while to concentrate on sucking and swallowing. Both girls will need to take all of their feedings via a bottle before we can even think about going home.

Other than these two topics, there's not much to report- which is a good thing. And we can finally use the word 'good', but girls are doing good. Thank you for the many prayers.

Getting Reacquainted

1 month, 3 weeks
Gestational age: 35 weeks, 4 days
We had a big day today! The girls got reacquainted after 7 long weeks. Reagan slept the entire time completely oblivious of her sister. Eden was a little fussy but once she had her thumb or her pacifier she calmed down, she looked at Reagan a few times but was more interested in sucking on her pacifier. It was super cute for me to experience them together and I think they liked it (or I'm going to tell myself that).

Eden had her third eye exam today and her ROP has progressed slightly. We need to monitor this very closely and the keep praying that it won't require laser surgery. She has another exam on Monday with the retinal surgeon to determine if it has progressed and to discuss laser surgery. Please pray that her ROP has not advanced any further and that she will not have to undergo surgery. Other than that she is doing very well. She is tolerating her nasal cannula very well and her O2 needs are very low. We also dressed Eden today, she seemed to like it. Her onesie looks more like a dress, but its still cute.

Reagan is rotating between her C-PAP and the nasal cannula and her O2 needs are also quite low. She is growing like crazy and you'll notice from the pictures that she has a bit of a double chin.

We are so blessed to have the most beautiful little girls!!

Making progress

1 month, 2 weeks, 5 days
Gestational age: 35 weeks, 2 days

Reagan and Eden are both doing well on their Si-PAP machines. Both have needed much less O2 this week than previously. Their MD is very happy with their progress. Eden hit the 1 kilogram mark today- 1000 g or 2 lbs, 2 oz!

We are still both sick :( My heart breaks not being able to see our little girls. Please pray that our illnesses pass quickly.

Our little fighter Eden

1 month, 2 weeks, 3 days
Gestational age: 35 weeks

Eden took a huge step today! She was extubated (ventilator tube was removed) and put on Si-PAP just like her sister. We have been praying for this day to come and it was very touchy if she would tolerate it, but so far she's doing well (as of 5:00pm). I had butterflies in my stomach waiting to find out how she would do. Her bloodgas shortly after extubation was great and we will continue to pray that she does well on Si-PAP and she won't be re-intubated (which is very common for these tiny babies). She also reached 975 grams today (2 lbs, 2 oz).

Reagan is doing well, she hit a milestone today also- 2000 grams (4 lbs, 4.6 oz)!

As for Mom and Dad, we are both sick with colds which means we are probably not going to be visiting the NICU until we get better. This is heartbreaking for both of us, but we simply cannot expose the girls to our germs. It is far too dangerous because they are so vulnerable right now. Please pray that Eden can remain off her ventilator and stay on the Si-PAP machine and also that Scott and I get better very quickly.

Reagan's first bath

1 month, 2 weeks, 3 days
Gestational age: 35 weeks

We had a fun day at the NICU, doesn't seem possible I know. Reagan got her first bath! What a special day, neither of us have ever bathed a baby so we needed some assistance from our RN Lynn. Reagan decided to pee on my hand shortly after we undressed her- I'm sure this won't be the first time. Then she wanted her bath to last a little longer, so she pooped in her tub. But overall she did very well with her O2 needs and seemed to enjoy her bath. We even took off her Si-PAP and washed her hair- she has a lot more hair than we remember! This was really special for Scott and I, we like doing actual baby things versus worrying about medications and machines. My Mom was there with us and was so excited to experience this fun event.

I was able to Kangaroo with Eden yesterday as well and her ventilator was giving us trouble, but she seems to enjoy holding very much. They both get lots of comments about how cute they are, but Eden especially has a hold on the medical providers hearts. In fact two RN's were arguing over who would be her primary RN today!

Both babies are quite stable, and usually last on the list for when the MDs round. This is a good thing, considering they used to call/talk to us first thing in the morning. Please continue to pray for our little one's especially for Eden to get off the ventilator very soon. Thank you again for your thoughts and prayers.

Our girls

1 month, 1 weeks, 5 days
Gestational age: 34 weeks, 2 days

Well Mom and Dad made it through the weekend without seeing them. The girls did just fine, we certainly didn't have to worry as much as we did.

Reagan is doing well. They tried to take her off her Si-PAP and put her on the nasal cannula, but she didn't tolerate it- her rate of breathing was too fast. They will keep trying. We are happy that they're being aggressive. She is up to 3 lbs, 13 oz!

Eden is doing well, they are starting to wean her ventilator settings and soon we can start taking about extubating! We pray that this is much sooner than they tell us. However she is not gaining weight, we finally figured out the problem, it looks like she has a UTI, so her MD is treating her for this.

We need prayer this week for Eden to gain weight and get off the ventilator. Thank you again for thinking about and praying for us and the girls this weekend!

On another note, post-partum related... now that I have reached 6 weeks I want to start working out again. So I threw on 2 sports bras (preventative of course for my health... hehe) and went out for a jog/walk. Scott rode his mountain bike next to me, and I jog/walk/shuffled a mile. It wasn't pretty but I'm glad that I did it. I have a great motivator to help me and soon I will be in my skinny jeans again!

Scott Hedin is an IRONMAN!!

What an amazing athlete!! I am the proudest wife right now!! Scott successfully completed Ironman Madison on Sunday, Sept 12th with a wonderful time. He was smiling a HUGE Scott grin out of the water and during his transition to the bike. On the first loop of the bike he was still smiling and passing people up a hill! The second loop took him longer because he stopped for nutrition, but he still looked good when he stopped to ask how the girls were doing and to give me a salty kiss. Next we saw him at the start of the run and even though his remarks were "this is hell" he was smiling and running consistently. His marathon consisted of some walking, but a good amount of consistent running. He ran through the finishing shoot and across the finished line with a smile to kill and his hands held in the air clutching his road ID which has a statement honoring our girls- "I TRI for my girls, Reagan and Eden". He saw my bright pink sign which read "Our Daddy is an IRONMAN, Reagan and Eden" and kept smiling even during his medical assessment.

It was a long day, but he did wonderful and I am so proud to tell our girls that their Dad is an Ironman. Eleven months of training, 2 months of taking care of his wife on bedrest, being the sole financial provider of our house, the birth of his beautiful girls, countless hours in the NICU and he still stayed strong the entire time and earned the coveted title of IRONMAN.

Holding our babies!

1 month, 6 days
Gestational age: 33 weeks, 3 days

Yesterday we held both babies!! What a great day. They both did fantastic. Scott held his little Eden for the very first time! When we hold these little girls the world stops and nothing else matters. I truly never want to let them go. Our hearts are so full of love!!!

Eden is being weaned down on her 02 levels slowly but steadily. We will talk about possible extubation (removing her vent tube) next week, but we will just wait until we see it. She is steadily gaining weight and she now enjoys being swaddled into what I can a burrito.

Reagan is doing well on her Si-PAP and her next step would be the C-PAP. She is being weaned off her nitric oxide, and should be off that within the next day or two. Her feedings are also going well and she is gaining weight. She has learned how to smile and what a beautiful little mouth she has!

Please continue to pray for our girls specifically that Eden will get off the vent very soon and that she will gains lots of weight. And that Reagan can take the next step to the C-PAP. Also pray for Scott and I this weekend as we will be away from them in Madison, WI for Scott's Ironman. I am afraid to leave them, but the RN's encourage us that this is a well-needed break and the girls will be fine. They said we can call 20 times if we need to.

Let us off this rollercoaster!

1 month, 3 days
Gestational age: 33 weeks

Reagan is still on the Si-PAP but really just teetering on being put back on the vent. We are praying non-stop and we have faith that God wants her to stay off the vent. I talked more openly with our Respiratory Therapist and they really just don't know why the girls lungs are maturing so slowly, they also said its just taking a lot longer than anticipated. Reagan's Neonatologist started her on another round of steroids today as well. Her feedings are going great and she's is up to 3 lbs, 3 oz.

Eden is doing well, her O2 needs are up and down but she should be started on another round of steroids this week. Her feedings are going great also and she is growing, up to 1 lb, 11 oz.

Scott and I are struggling... we are stressed and anxious. We have even found ourselves being more critical of the RN's. We just don't understand why our babies lungs are maturing so slowly. Its painful for us to see them still not breathing on their own. We need lots of prayer this week. Scott has his Ironman next Sunday and he has that stress plus the constant rollercoaster with the girls.

Reagan's little mouth

32 days old

We can finally see the whole thing because she was extubated today (her ventilator tube was removed)!!! She was put on a Si-PAP machine (similar to CPAP) which pushes air into her nose, it essentially acts as a ventilator but it’s not invasive. Our Neonatologist warned us that even though she’s going off the ventilator, she still may have to be put back on if she doesn’t tolerate the Si-PAP machine. So far she’s doing great, she is being weaned down on her O2 and is learning to take her own breaths. We are thrilled that she’s doing well and will keep praying that she can stay off the ventilator and move onto the next step which would be a nasal cannulas. God is truly answering our prayers!!

Eden is recovering well from her surgery, she is still not feeling great but she is being weaned down on her O2 levels. Her feedings were re-started today and she tolerated our touch quite well. Please pray that Eden will be right behind Reagan and will be able to get off her ventilator very soon.

Wednesday, September 1, 2010

I have no more fingernails and Scott’s hair is thinning

31 days old

Why? Because Eden had surgery today. We knew that this was a possibility to correct her PDA (open valve in her heart) but we didn’t expect it to be today. This week has been a tremendous struggle and we have been under a lot of stress, so surgery kind of topped the cake. She had an echocardiogram to check the blood flow from her heart and lungs, and it showed that more blood was circulating incorrectly. So at 12:38pm we were told that she would have surgery, surgery was at 3:25pm and by 4:00pm she was back in her isolette in her room. The surgeon was very laid-back and reassured us that these surgeries are done very often with very few complications, but we still had trouble containing our emotions. We cried a lot and prayed even more. She did very well and as of 5:30pm she is requiring less O2 already. Her incision is small and is located underneath her armpit. She will rest the remainder of the night and hopefully resume feedings tomorrow. Just to show the surgeon how feisty she is, the RN’s told us that she pooped and peed on the operating table!

Reagan was started on steroids and nitric oxide both to help her lungs and to allow her to be at lower O2 levels. She responded quite well to the nitric and her O2 needs are less than earlier this week. We are still trying to figure things out with her lungs, but for now she is doing OK.

Both girls will need eye exams this week to watch for Retinopathy of Prematurity (ROP), which is an eye problem that can cause the retina to grow abnormally. ROP needs to be monitored closely because if left untreated can cause vision loss. We are terrified of what ROP is and can cause, so we want the girls to have these exams sooner than later, but the eye exam is painful and disruptive so both babies need to be stable enough to tolerate them. Unfortunately at this point they are not and we may need to wait.

Thank you for praying for our girls this week, we need so much prayer and ask that you continue to do so.