Since Returning Home

Having the girls home at last has been wonderful! They continue to grow and develop everyday. It is definitely different and life changing, but wonderful. Since being home we have had numerous doctor follow ups. With each appt. the girls are doing great and continuing in the right direction. Mocha (our choc lab) absolutely loves her babies. She is great with them and tends to go where ever they are and if they cry she looks at us (or barks) to make sure we respond to them. Also, if Ryan and I turn our heads for just a second she will sneak in for kisses. They seem to be ok with it and don't fuss when it happens. 

Ryan and I have adjusted to functioning on very little sleep (though it is not easy at all). We have greatly appreciated the help from Grammy, Mimi, and Papa and look forward to having Grandma here this weekend. Everyday their personalities are showing more and more, and I love watching them grow and develop. Though they are out of the NICU Ryan and I are still concerned, and watch them very closely (especially when the monitors go off).

Haylee is doing amazing. She continues to grow and gain weight with ease. She is around 8 lbs now and going strong. Since being home her reflux has gotten slightly worse and she has also been put on prevacid. Overall, she is a very content baby, and really only seems to fuss when gassy or hungry. She spends most of her time eating, and then sleeping. When she is awake she loves to take in the world around her. She will stare and watch everything that is going on, and has the cutest facial expressions. I just love to watch her learn and explore. As of right now she is not a huge fan of tummy time, she tends to just sleep right through it!

As far as things go for Rylee, she has a few more medical concerns than her sister, but is doing fantastic. Also, what she seems to lack in size she more than makes up for in personality. She knows what she wants, when she wants it. About a week ago she decided she no longer wanted to be on oxygen. For a few days she was pulling it out every chance she got. Then one day I picked her up from her nap and the cannula was above her nose and the tape was somehow in her little hands. At this point I gave up fighting with her and called the pulmonologist. The doctor agreed to trial her off of oxygen and she has been doing great! She is doing much better with her feeds, though she still has an episode or so occasionally. Because of this the pulmonologist requested she see a cardiologist just to be on the safe side.

  

 Rylee

 Haylee and Mocha

Home at Long Last

As of last Wednesday we are all finally home. Rylee was discharged Wednesday, and once we picked her up we drove straight home. It has been an interesting adventure thus far, and we can't thank my mom enough for all of her help. We have spent the last week learning adjusting to the girls, as well as attending doctors appts (four so far). Our first night home was the ultimate introduction! Rylee spiy up all down my shirt, followed by a nice big Haylee blow out!! Both girls are doing wonderful!! Haylee continues to grow everyday! She is up to 7 lbs 8 oz. Rylee isn't too far behind, weighing 6 lbs. They had their 2 month birthday yesterday, and time seems to just be flying by.

We have had many sleepless nights, and days full of feedings, and diaper changes. Ryan and I are learning as we go and enjoying every sleepless minute. I never knew how fast three hours could fly by. We see more of their personalities everyday! Haylee is a calm and content baby. She just loves to hang out and view the world around her. Rylee on the other hand is quite feisty! When awake she wants to be held, and will let you know when she needs something!! 

Almost There

As of Monday (7 Sept) Haylee has been home with us, which is in part why it has taken so long for an update. It has been quite an adjustment, but something we wouldn't change for anything! As of right now Rylee is still in the hospital and we are somewhat unsure of when she will be released. With Haylee home and Rylee in the NICU our time is now split between them. One of us has to stay home (in the hotel) with Haylee, while the other goes to the NICU to spend time with Rylee. 

Though Rylee is doing better with her feeding, it is still inconsistent. Ryan fed her the other day and she Desated into the 30s, requiring assistance to come back. However, yesterday I fed her and she did a wonderful job, not Desating one time. So it is up and down with her still as she works to overcome the effects of her reflux, and prematurity. At this time she is still on oxygen, but the Dr.'s are thinking about switching her back to having oxygen only while she is feeding. No matter which way they go she will be coming home on oxygen and the apnea monitor.

Our Fight

            The helplessness that you feel as a NICU parent is like no other. As a parent you know that you need to be strong for your children, but no one ever really mentions that helplessness you feel that accompanies it. We try to be strong everyday and walk into the NICU with a smile on our faces. We hold our precious babies, I wake up every three hours (day and night) to pump food (life juice as we call it) for my girls, we have learned how to stimulate our daughter when she DESATs so low and needs assistance to recover. Yet as we do all these things we remain helpless. This is a fight that we can’t do anything about. Our girls have been tremendous fighters, and continue to be so. But, I can’t help but be overwhelmed with sadness and frustration for them. Haylee is doing great and should be coming home soon. Each time we think it might happen, something occurs and they extend her time. Even though she will be released, once home her struggle still continues. She will be home on a monitor to alarm us if she at any point stops breathing, in which case we must intervene. All things considered she is doing great. She had a rough start, being born 2 months early, but has prevailed.

            Rylee on the other hand continues to struggle. She is our little "mini" fighter. She was born as a micro preemie, weighing 2 lbs and 15 oz. Her fight has been a tough one, full of many successes and setbacks. Though born small, she is full of fight! Every time we walk into the NICU we never know which direction she will be going.  We relish in the steps forward and grieve for the steps back. As of this morning her DESATs have continued, so much so that she is back on oxygen and having chest x-rays. Luckily, it tends to occur only during feeds and should get better with time and maturity. Though this offers some reassurance I can’t begin to explain the heart wrenching feeling of feeding your daughter, and then having to revive her when she stops breathing and can’t come back on her own. This is again where strength and helplessness combine into one. We know what to do to bring her back, but having to do it because she can’t is very tough. Holding her after she eats and hearing her fuss and cry because of the pain of the reflux break our hearts. We wish we could take it away and make it better for her. In time this will change and she will get better, and for that we are eternally grateful. We are blessed that we have two beautiful daughters, who given tough circumstances will come out of this OK.  We cherish that fact and are truly grateful for it. But in the here and now it is just hard. As a mother I don’t want them to experience pain, and I want to fight these battles for them, to make it better and I cannot.

Its a Matter of Time

We were initially hopeful that the girls would be home at 35 weeks. We have now hit the 37 week mark, and we do not know when they will be ready to come home. I know they need more time, and as they get older and bigger things will get better. 

As of right now Rylee is still struggling with her breathing. She continues to have episodes where she stops breathing long enough to change color (blue) and need stimulation to pick it back up again. She had two major episodes today, one requiring the RNs to use oxygen on her. The good news is that she does not have any major problems or conditions that are causing the episodes to occur. This however, does not make it any less serious or stressful when it does happen. As of right now we are not sure when she will be able to come home. She needs to take all of her bottles by mouth (just she becomes overly tired and is unable to do so) Part of her episodes are also due to her being exhausted from trying. As a parent it is very difficult to watch her struggle and know there is not much we can do. We are there everyday and hold her while we are there, reassuring her along the way.

Haylee continues to do well. She is eating all her feeds by bottle with little trouble. She has had some color changes (desaturations) during some feeds and did require stimulation earlier this week. Overall she is doing great, but they are keeping an eye on her due to the small episode. She is in good spirits and showing her personality more and more everyday.

This has been a very difficult situation for both Ryan and I. We knew that having been born so early there would be set backs and struggles along the way, however there is no way to prepare yourself for what occurs. They are beautiful, sweet baby girls, and we look forward to having them home. The stress of the situation seems to be compounded by the stress of being so far from home, and trying to figure out what to do once they are home. There are limited resources where we are at, and being so far away from their needed healthcare is concerning. We are taking everything one day at a time an will figure things out as it comes.

 Haylee

Rylee
 

Day By Day

Some days you just need to breathe, believe, trust and step back to witness the incredible strength of your tiny miracle….Julia Toivonen

The NICU experience is truly day by day. Within a day of posting about Haylee coming home the plans began to shift. I believe we waited a few days about her coming home just to make sure it was happening. Though we waited it only took one day for that to change. Haylee was pretty set to be coming home this weekend, and at this point it appears it won't be for another week or so. Wednesday night heading into Thursday Haylee began to struggle with some of her feeds, we didn't think too much of it and figured she was just getting tired from all her hardwork. Well come Thursday we got a phone call from our RN, who told us Haylee had an episode that morning where she needed to be stimulated to begin breathing again, and she took some time to recover. Because of this and her hemoglobin levels Haylee was going to need a blood transfusion. After the transfusion she has been doing much better, though she has not passed her car seat test yet. As much as we want Haylee to come home we do not want to rush her. We were disappointed, but have come to understand that things change from day to day, and we have to follow the girls lead.

The same day that Haylee was given a blood transfusion, Rylee was given one also. The previous night Rylee had three episodes while I was holding her. At one point her oxygen saturation dropped as low as 38. With each episode she would dip and not fully recover in between. Along with the episode her skin color was very pale, and we could tell something was off. That night the RN drew labs and Rylee was very low on her hemoglobin as well. Following the transfusion Rylee seems to be doing well, but not fully there yet. Friday wasn't very eventful, but today was. She again appears pale, and did have three episodes. But she is a fighter and seemed to have turned things around as we were leaving. When we asked what it could be the RN let us know there were multiple possibilities, but three that would be most likely. One is that she just tired from all her feeds and needs a little break, two she may need one more transfusion, or she could potentially have an infection. After taking a break from her bottle feeding, she appears to be doing better. Hopefully that is a sign that she just needed some extra sleep.

As I write this even though I am discouraged, we still feel very fortunate. So many premature babies have a host of other more serve conditions to fight through, and we are just so blessed with the girls. Though they struggle at some points, they are overall healthy, thriving, and doing well. They continue to gain weight (Haylee is now 4 lbs 15 oz and Rylee is 4 lbs 2 oz), and will eventually outgrow the apena and reflux. It is a lot to work through, but in the end they will be ok.

Rylee taking a nap and Haylee hanging out. 

HAYLEE IS COMING HOME

As the title might give away, Haylee is coming home. We met with the doctor today and he told us we are in discharge mode with her. He estimated about 3-4 more days (Nurse believes it will be sometime over this weekend). No matter when we can't wait to have her "home" (in the hotel) with us while we wait for Rylee. At this point Haylee has had her feeding tube removed, and has thus far taken all feeds today by bottle. The only obstacle that remains is she must pass her car seat test. 

Though Rylee isn't being discharge this weekend, she is close to discharged as well. They aren't really willing to give an exact time-frame, but it seems like it would be two weeks max. She continues to gain weight, and is 2 oz from meeting the 4 lbs requirement. Also, she is taking a bottle every other feed, sometimes two in a row. She is doing a great job trying to meet all her goals. As of this morning she is out of her isolate and into a "crib". Though she still has an episode or two of not breathing, it will not hold her up from being discharged. She will more than likely be sent home on a monitor. We can't wait to have all of our family home together

Moving on Up

We received a very encouraging and exciting phone call today from the doctor, following a very good night with the girls. Last night Haylee took two bottle feeds in a row. The first bottle was fed to her by her daddy for the first time. They were a great team, and Haylee got through the whole bottle! She is not a fan of burping, but they worked it out. The next bottle feed she was tired and it took a little extra effort, but she did it. Ryan and I were so proud of her!! Also, last night Rylee attempted her first ever bottle feed with great sucesss! She was able to take her whole bottle and did not have any spit up afterwards. We are so excited to see their progress, and look forward to the day they are home with us!

Speaking of coming home...when talking with the doctor today they are starting Haylee on the discharge plan. They have taken her off all meds (like caffeine) and she will be monitored for the next 6 days. If she does not have any bradycardia or apenic episodes she will be eligible for discharge! She will also have to pass the carseat test, and being able to complete all feeds by bottle. We are hoping all goes well this week and she will be "home" with us in no time!!

Though Haylee is in the final stretch, Rylee still has a little ways to go. They are starting to wean her off of oxygen today, and within the next couple of days they will be condensing her tube feeds from 1.5 hrs to an hr. Theses are major steps for her and we are praying that she is able to tolerate it all and keep moving forward! She is overall doing great, and we hope she continues in this direction so she can join us soon too!

 Daddy feeding Haylee for
first time.

Rylee bottle feeding for the first time.

Sisterly Love

Today we went to the Hospital early to prepare for the girls acting debut. In order to transfer them from one room to the other they put both girls in the same bassinet. It was by far the most adorable thing I have ever seen. On the ride over both girls were sound asleep and didn't really notice each other, the ride back however was a different story. The girls were placed facing each other and wouldn't stop staring. They were completely enthralled with each other. We loved being able to see them together and enjoying each other's company. Hopefully only a few weeks and we can all be home together!

As far as the girls go, they both are doing well. Haylee is at 4 lbs 7 oz and continuing to grow everyday. She has almost grown out of her preemie onesies. She has reached pretty much every milestone except one. All that is left for Haylee is to get all of her 8 feed times via bottle. As of right now she is able to do 3 out of the 8, but we are working on it and she is trying very hard. 

Rylee is also continuing to grow, which is the most important thing for her at this point. She now weighs 3 lbs 8 oz, though she did lose about 10 grams last night. She is still struggling with having apena, and had two episodes today while mommy was holding her. It was a little overwhelming because I saw her color change and her stop breathing. The RN came over right away and took her from me, then put her on oxygen. Not minutes after this occurred the NICU lost power ,will all monitors and beds going down. Luckily, all the nursing staff reacted quickly (the back up generator didn't quite work either) hooking the babies up to portable monitors, and getting other equipment to keep them safe. In the mean time I was watching Rylee like a hawk trying to keep her awake until we could get a monitor on her. She remained stable and was able to be hooked back up. However, after the power came back on she decided to have another episode, this time it was while being examined by the doctor. I was able to stimulate her enough for her to come back on her own without requiring oxygen. The doctors and nurses all believe these episodes are related to her acid reflux, and nothing major. Unfortunately with that being the case it is something that she will grow out of in time. Right now they are continuing her antacid and now will be adding some rice cereal to her bottle. They use the cereal in an effort to allow the food to sit in the stomach and not come up as easy or as much. 

Everyday we go and visit with them we get to see more and more of their personalities. From what we can tell one has a very calm and easy temperament (Haylee) and the other is as fiesty and demanding as can be (Rylee). We enjoy seeing them grow and change and we can't wait to have them home. Again, we truly appreciate everyone's thoughts and prayers as the girls go through this process, they are very loved!!

The Ride Continues

It has been a while since our last update and quite a bit has happened. I can't emphasize enough how true the statement is about the NICU being a roller coaster. Although Haylee has been doing great with very little set backs, Rylee continues to encounter bumps in the road. Each day has been a guessing game, whether or not it will be a good news day or bad news day.  Overall the girls are doing great and we couldn't be more pleased with their fight and determination.

Let's go back a couple of days to our not so exciting 1:00 am phone call. Any time our phone rings at night from the NICU we are both holding our breath anxiously awaiting to hear the situation. For this particular phone call they needed consent from us to give Rylee a blood transfusion. It turns out that Rylee was continuing to have episodes where her saturation (oxygen in the blood) and heart rate continued to fall. After running labs it was noted that her hemoglobin was low. After the transfusion she seemed to do a little bit better, though we couldn't hold her because she had another IV in her arm. The following day her IV was out and they attempted to take her off of her NG oxygen. As we were leaving she was doing well without her oxygen, and we looked forward to holding her gain today. Unfortunately when we got in today she was back on oxygen, though not just the nasal tube, but the full CPAP. This was a huge surprise to us and a shock to see. Again we can't hold her, but we know it is for the best and we only want to see her improve. Along with the CPAP for oxygen they are going to try her on an antacid as a means to help with some of her problems. They believe a lot of her issues may be related to her severe acid reflux. Lastly, she is continuing to gain weight, she finally reached the 3 lbs mark a few days ago and is up to 3 lbs 4 oz.

Now for little Ms. Haylee. She has been doing so well the last few days and we could not be happier. We have slowly been bottle feeding her, some days have been a little better than others, but we continue to try. She has pretty much reached all of the requirements to go home, with the exception of taking each feed from the bottle. She is doing amazing at keeping her own temperature, and has moved from the incubator to a bassinet. That was a great sight to see this morning.  We did have a slight set back today as we tried to bottle feed her. She had a little episode and her Stats started to drop, so the nurses made the choice to do her feed over the tube. While I was holding her she did have a bigger episode, so much so that she went blue and the RN had to give her some oxygen. She rebounded quickly and Ryan and I were able to hold her again, with no further incident.

The Journey Continues

As we entered the NICU both Ryan and I had only one thought in own minds, when will we be able to take the girls home. What we (or maybe I) failed to realize is how fearful I would also be as the moment slowly approaches. The girls still have a decent way to go, but Haylee is getting closer and closer to being able to come home with us. This is the best news ever, however, the excited and joy is mixed with fear. At first the monitors and tubes were overwhelming and scary, now they are a sense of safety. I know when something is wrong with either of my girls the alarms will let us know, this will not be the case at home. I know deep down the hospital will not release them until they are ready, but having spent weeks watching them struggle it is difficult to imagine not having the safety of the monitors. This is something that I am sure will decrease over time, and we will get into a routine once home, but the anxiety lingers.

On a much happier note, the girls are still doing great! Haylee is officially up to 1700 grams (3 lbs 12 oz). She is continuing to do well with her bottle feeds (minus her refusal to burp on occasion). I was finally able to bottle-feed her today. We struggled a little bit as mommy is learning, but the RN was great in helping us out. Haylee did give daddy a little scare today while cuddling. She decided to stop breathing for a moment and had a bradycardia episode turning a little blue. She had forgotten to breath, and the nurse had to stimulate her slightly. They say this happens because their brain pathways are still slightly immature and it will correct overtime. But aside from that Haylee really wants to come home and is checking off the list little by little. Not only is she gaining weight daily, but has also been able to control her temperature. Tomorrow they are going to open her incubator and if she regulates her temp for a full 24 hrs she will be moved to a crib. She is just doing so well and we are so proud of her!

Oh and for all those who read the diaper incident, Haylee got mommy today too! As I was changing her she decided that the time to use the bathroom would be when the fresh diaper was on. But, of course she didn't stop there. After giving her a few minutes to finish I changed her again, at which time she began to go again. Three diapers later we had it all worked out!!

Now for Little Ms. Rylee. Today we were told her 48 hr blood culture came back negative, which is great news. The 72 hr results came back negative as well so Rylee is officially off the antibiotics. After talking with the Doctor they believe her episodes were also due to prematurity and should rectify over time. She is still on oxygen, but they are looking to try to wean her off again in the upcoming days. The best news we received today was that she has finally broken the 3 lb mark! She is officially 3 lbs and .3 oz. This is amazing news and we hope that she continues to gain weight with no more set backs.

Our Strong Girls

We would like to start out this post by first and foremost thanking everybody for their kind thoughts and prayers for our family. We can't not express how wonderful it feels to have so much love and support for us and our girls during this time. 

Today at the NICU was so much better than yesterday. We continue to see a lot of forward progress from Haylee, and Rylee isn't too far behind. Today we were able to hold Haylee while she was swaddled and it was such a great feeling to be able to look down in her face and have her look right back at us. After a couple hours of cuddle time together the nurse put Haylee on a bottle for her 2:00 p.m. feed. This was the very first time she has ever been introduced to a bottle, and did a phenomenal job! In order to be discharged one of the criteria is that a baby has to be able to complete a feed within 20 minutes, she did her first ever bottle in 15! It was so amazing to see her put everything together in order to drink from the bottle. She was able to work out sucking, swallowing, and breathing with little to no problems! We were so proud of her!!!

As far as things go for Rylee, she is still on her oxygen tube but it was reduced to .5 liters and 21%. This was great news, as she is handling her breathing well at such a low level. She is our little fiesty fighter, and is turning things around very quickly. Before we left today the RN told us she would probably have Rylee completely off her NG tube tomorrow, as well as move her feeding tube to her nose. We can't wait for that to happen. The RN also told us if all goes well she is going to try to bottle feed Rylee for the first time tomorrow. We are so excited to go in tomorrow and see what happens! Also, while we were back in our room we got a phone call, all of Rylees' test have come back negative, so it does not appear that she has an infection!! The blood culture still has 48 hrs to be fully complete, but within the first 24 hrs there are no signs of infection.

We discussed with the nurse some more about what the requirements would be for the girls to go home and she gave us a list of criteria they had to meet. The list consisted of 1. They have to be at least 35 weeks (which the girls will reach on the 17th of August. 2. Be able to take a whole bottle within 20 min. 3. Be able to regulate their own body temperature. and 4.  Weigh at least 1800 grams, which is about 4 lbs. If Haylee keeps going the way she is, she may be able to leave around then. Rylee, though progressing in all areas is still a little small. She was at 2 lbs 15 oz today, so hopefully she continues to gain weight steadily. 

 RN bottle feeding Haylee                                                          

Rylee and mommy hanging out

The NICU Rollercoaster

One of the first things we were ever told when we walked into the NICU was that this would be a roller-coaster ride. There would be good days and bad, steps forward as well as steps back. Up until today we had been having a great ride with both girls taking mainly steps forward. Though today was a great day for Haylee, Rylee had a bit of a set back.

When we walked into the NICU today the RN was in the process of putting Rylee's NG (nasal oxygen) back in her nose. As we approached the RN began to fill us in. Apparently Rylee has been episodes of apnea and Bradycardia. At this time they are not sure if it is due to apnea, or a possible infection. In order to determine what is going on they ran a CBC (blood test) to check for an infection, which came back negative. They were also in the process of getting blood and urine cultures to look for closely for a possible infection. Along with the cultures the put another I.V. in her foot in order to give her antibiotics, to stay ahead of the infection if that is the case. It was a rough NICU day for Rylee, but we know that she is in good hands. So good news for Rylee is that she is steadily gaining weight. She is back up to her birth weight of 2 lbs 15 oz, and is gaining more and more everyday.

As far as Haylee goes, it was a wonderful day. When we walked in we noticed that Haylee was swaddled in blankets and wearing a clothes. This is a great sign, it means that she is gaining weight and finally weighs enough to be in clothes! She is actually up to 3 lbs 8 oz, and gaining more everyday. This is also the beginning of her slowly getting out of the incubator and into a crib. They will slowly stop using the temp. feature on her bed, and if she maintains her body heat she will eventually be moved out of the incubator!!! Also, she is beginning to show signs of being able to feed on her own, and we are looking at being able to potentially try to feed very soon! 

 Apnea (ap'-nee-ah) is a pause in the regular breathing of a baby lasting longer then 15-20 seconds. Normal breathing may speed up or slow down but usually does not stop for any length of time. Bradycardia (bray-dee-car'-dee-ah) is the medical term for a heart rate that is too slow.

Haylee Swaddled. 

 

Rylee feeling better after getting her oxygen back.

Getting Better Everyday

Day 11: Everyday we go to the hospital and visit with our girls we are amazed at how great they are doing. The last few days they have continued to do better and better. As of right now all of their I.V. lines have been removed. Rylee's umbilical line was removed yesterday (2 August), and Haylee's PICC line was removed today. It was so great to see Haylee's bulky Picc line removed, and made for a much more comfortable cuddle with daddy. We are so excited to see them remove more tubes and lines.

Rylee appears to be taking after her mother, stubborn and feisty. She had decided yesterday that she no longer wanted to be on her nasal oxygen and proceeded to pull it out multiple times. Well her determination paid off, and today they removed both her and Haylee's NG tubes. While we were visiting today both girls did a great job of breathing without the extra oxygen. Though Haylee did forget to breath a couple of times, she was able to recover on her own. 

As of right now the only tubes left are their feeding tubes. With the NG tubes removed they are going to move them from their mouth to their nose, which is suppose to be more comfortable. The girls continually have their feeds increased and have had some protein added to their milk to help them gain weight. Haylee and Rylee both are starting to gain slightly, getting closer and closer to their birth weight.

And lastly, I got to hold Rylee today!!! It has been 11 days since she came into this world, and I have been waiting for this moment. In true Rylee fashion she made it a cuddle to remember! As soon as she was on my chest she began rooting around and sucking as if she was looking to feed, and became very upset when it couldn't happen. She was also turning her head and even pushing off of me slightly. Once her feeding pump was turned on and a pacifier put in her mouth she began to calm down and fall asleep. Everyone was very impressed with her behavior today, most of the time that is not seen until at least 34 weeks!!

Also, as everyone looks at pictures let us know what you think, we are beginning to have a hard time telling them apart in pictures...could they be identical??

 Rylee smiling after Kangaroo time with Mommy






 Haylee cuddling with Daddy yesterday